Love, Angie,Jason
and Jack Riley
If you're still not sleeping, check out the Norad Santa Tracker!
Saturday, December 24, 2005
Tuesday, December 20, 2005
Jack's Specs...
Well, take a look everyone! Jack looks so handsome in his new glasses!
He was such a big boy yesterday. I was so proud of him. He was smiling and laughing and flirting with the ladies who were doing some last minute shaping and fitting of his glasses. He'd let them put the glasses on and then he'd turn to the mirror and give a huge cheesy grin! He continued to wear them while we went for groceries and then wore them in the car the whole way home. He did need a break right after dinner but today he's worn them all day long (except during his nap of course).
Daddy also gave Jack a very nice big boy haircut. Jack didn't like it very much but I think he looks great!
Over the weekend we had a wonderful family dinner with the Wilhelm clan. It was very fancy and Jack could not have been a better little boy. Grammie Tina just e-mailed me this picture of handsome Jack all dressed up! What a nice time we had. (Forgot to add the picture the first time around...ooops)
Grandpa Ray and Grandma Kim were over to celebrate Christmas with us on Sunday. Jack loooved opening his presents. The little race car is still the first toy he goes for when digging in his toy chest.
Jack was trying to help me wrap gifts this morning but I didn't tell him he was actually making a little more work for mommy, so I put the presents away until he went down for a nap.
We are looking forward to a wonderful Christmas -- can't wait to see everyone. I will be sure to post an update and more pictures soon.
He was such a big boy yesterday. I was so proud of him. He was smiling and laughing and flirting with the ladies who were doing some last minute shaping and fitting of his glasses. He'd let them put the glasses on and then he'd turn to the mirror and give a huge cheesy grin! He continued to wear them while we went for groceries and then wore them in the car the whole way home. He did need a break right after dinner but today he's worn them all day long (except during his nap of course).
Daddy also gave Jack a very nice big boy haircut. Jack didn't like it very much but I think he looks great!
Over the weekend we had a wonderful family dinner with the Wilhelm clan. It was very fancy and Jack could not have been a better little boy. Grammie Tina just e-mailed me this picture of handsome Jack all dressed up! What a nice time we had. (Forgot to add the picture the first time around...ooops)
Grandpa Ray and Grandma Kim were over to celebrate Christmas with us on Sunday. Jack loooved opening his presents. The little race car is still the first toy he goes for when digging in his toy chest.
Jack was trying to help me wrap gifts this morning but I didn't tell him he was actually making a little more work for mommy, so I put the presents away until he went down for a nap.
We are looking forward to a wonderful Christmas -- can't wait to see everyone. I will be sure to post an update and more pictures soon.
Monday, December 12, 2005
Early Christmas Gift!
Hello and good morning!
We've had a couple of really busy weeks! Jack saw his eye doctor last week. Jack's left eye is still turning in quite a bit, so we are to continue patching two hours a day and he also prescribed glasses to help strengthen Jack's eye muscles. If the glasses and patch don’t stop the turning in of his eyes he may need surgery. My heart sank when he said that. I understand it’s a “simple” surgery but I am still not prepared to watch him go through anything like that. I’ve sort of been proud and relieved that he hasn’t had any surgery since the NICU. It’s coming up on three years since his first/last surgery. So I am determined to take the glasses seriously and wear them on him religiously.
Over the weekend we went to pick out a pair of glasses for Jack. He looks so handsome and grown up! They are wire rimmed, and a light blue color. Luckily we liked that pair because it was one of the only pairs that fit his tiny face! They will be ready in a week.
Jack's using a lot of new words! He's been saying help, cookie, car, go, ball, co-co (f0r cheerios), nana (for banana), and still singing like a pro with twinkle, twinkle little star at the top of his request list!
Jack finally discovered the presents under the tree -- he actually opened one last night and is now proudly playing with a new toy. I hid the other ones upstairs in his closet for now!
We finally have an appointment for an evaluation for Botox injections!!!!! We go to CHOP On January 21st and about two weeks later the injections will be scheduled. At CHOP they do the injections under sedation. This is so they can be very, very precise with which muscles they inject the botox. I am a little nervous about the sedation, but trust that this is the best way for Jack at this age.
We are looking forward to Christmas and spending time with family and friends. Only a few weeks until Santa comes!!!! YAY!
Just this morning I have added a mailing list sign up option as well as a guestmap option. Both are pretty cool in my humble opinion! Be sure to check them out!
Wednesday, November 30, 2005
Happy Holidays!
We had a very nice Thanksgiving holiday this year. Jason was off work for several days so we were able to spend a lot of time just hanging out and decorating for Christmas. We had a scrumptious dinner at Grandma Linda's and just finished the leftovers this week!
Unfortunately Jason, Jack and myself all came down with a cold -- YUCK! I took Jack to the pediatrician on Monday and she prescribed an antibiotic. He's also cutting two year molars so he's been a bit cranky. I hear him stirring now, and he's supposed to be napping!
Jack got his new braces and they are great. They are much taller than the other ones but with the hinged ankle he's more steady on his feet. He's also becoming more frustrated and I can tell he wants to walk so badly! We are still on the waiting list for Botox injections -- I have a feeling once we get those there will be no stopping him!
Here is a picture of our Christmas tree. Jack loves the tree -- specifically he finds it a perfect place to put his blocks and other small toys! He hasn't discovered the presents underneath yet, but I have a feeling there may be some re-wrapping in my near future!
Unfortunately Jason, Jack and myself all came down with a cold -- YUCK! I took Jack to the pediatrician on Monday and she prescribed an antibiotic. He's also cutting two year molars so he's been a bit cranky. I hear him stirring now, and he's supposed to be napping!
Jack got his new braces and they are great. They are much taller than the other ones but with the hinged ankle he's more steady on his feet. He's also becoming more frustrated and I can tell he wants to walk so badly! We are still on the waiting list for Botox injections -- I have a feeling once we get those there will be no stopping him!
Here is a picture of our Christmas tree. Jack loves the tree -- specifically he finds it a perfect place to put his blocks and other small toys! He hasn't discovered the presents underneath yet, but I have a feeling there may be some re-wrapping in my near future!
Thursday, November 17, 2005
I figured out video!
Let's hope it works -- opinions please! Can you see the video? How long does it take to load? It's a quicktime movie, so you'll need the Quicktime Player.
Also, if you get a white screen after the video loads, try hitting the refresh button (or F5 on the keyboard). This worked for me.
This video is of an 11 month old Jack Riley, very messy guy eating his cereal. Can you believe how much he's changed? I remember that day like it was YESTERDAY!
Also, if you get a white screen after the video loads, try hitting the refresh button (or F5 on the keyboard). This worked for me.
This video is of an 11 month old Jack Riley, very messy guy eating his cereal. Can you believe how much he's changed? I remember that day like it was YESTERDAY!
What a week!
LOOK MA, NO HANDS!
First, our eye appointment – all looks good we just have to do some patching with the left eye now. The ‘trouble’ started after we waited for over an hour in a packed waiting room – the doctor was just about to come in to see Jack and Jack had a massive, massive, messy situation occur in his diaper. I excused us to the rest room only to find someone must have been taking a shower in the sink because it took them FOREVER and a day to get out of the bathroom. Well, then I see there’s no changing table (in a PEDIATRIC eye care center) so I had no choice but to lay Jack down on the ICKY bathroom floor. He’s screaming (who wouldn’t?) and then I see the extent of the situation. All over his legs, socks, pants, onesie, shoes, BRACES, you get the picture, I am sure. I had no idea what to do. Luckily I had a shopping bag in my back pack so I piled the dirties in the bag along with the dirty diaper and wipes and changed Jack’s clothes. The only bad part is the last time I packed the diaper bag it was warm out. So all I had was a onesie and jeans that were 4 inches too short! So out we came Jack with ‘capri’ style jeans, no shoes, no socks and a onesie. In cold weather. Meanwhile I am sweating like a hostage because my adrenaline was pumping – the doctor was waiting, Jack was a mess and I had to tote around a very stinky bag…oh boy.
Then the doctor wanted to get a look at Jack’s optic nerves so he tilted the chair back (like in a dentist’s office) and had me do some sort of Alligator wrestling hold on Jack. My legs were wrapped around Jack’s legs and I had to hold Jack’s arms and head completely still. Well, you know how strong Jack can be – so the Dr. called in a male student and a male nurse…so poor Jack and I had three strange men holding us down. It was miserable. I was sweating and Jack was crying…I understand the importance though but boy, isn’t there a better way? Poor Jack. This is the part that makes me feel so guilty. What 2 year old has to go through this kind of ‘torture?’ Anyway, we survived, and both got a hot bath as soon as we walked in the door.
The eye doctor wants to follow up with the patching in a month...they won't have to examin his optic nerves so it should be less stressful! And I've already repacked the diaper bag with more appropriate attire.
Later in the already busy week we showed up at speech therapy on the WRONG DAY!! I almost cried...we just hopped back in the car and drove the 40 minutes home only to return the next day for our correct time. We are so looking forward to the weekend!
Jack's braces are ready! We go to pick them up on Monday -- woo hoo!
I cannot believe next week is Thanksgiving -- where are the weeks going????
First, our eye appointment – all looks good we just have to do some patching with the left eye now. The ‘trouble’ started after we waited for over an hour in a packed waiting room – the doctor was just about to come in to see Jack and Jack had a massive, massive, messy situation occur in his diaper. I excused us to the rest room only to find someone must have been taking a shower in the sink because it took them FOREVER and a day to get out of the bathroom. Well, then I see there’s no changing table (in a PEDIATRIC eye care center) so I had no choice but to lay Jack down on the ICKY bathroom floor. He’s screaming (who wouldn’t?) and then I see the extent of the situation. All over his legs, socks, pants, onesie, shoes, BRACES, you get the picture, I am sure. I had no idea what to do. Luckily I had a shopping bag in my back pack so I piled the dirties in the bag along with the dirty diaper and wipes and changed Jack’s clothes. The only bad part is the last time I packed the diaper bag it was warm out. So all I had was a onesie and jeans that were 4 inches too short! So out we came Jack with ‘capri’ style jeans, no shoes, no socks and a onesie. In cold weather. Meanwhile I am sweating like a hostage because my adrenaline was pumping – the doctor was waiting, Jack was a mess and I had to tote around a very stinky bag…oh boy.
Then the doctor wanted to get a look at Jack’s optic nerves so he tilted the chair back (like in a dentist’s office) and had me do some sort of Alligator wrestling hold on Jack. My legs were wrapped around Jack’s legs and I had to hold Jack’s arms and head completely still. Well, you know how strong Jack can be – so the Dr. called in a male student and a male nurse…so poor Jack and I had three strange men holding us down. It was miserable. I was sweating and Jack was crying…I understand the importance though but boy, isn’t there a better way? Poor Jack. This is the part that makes me feel so guilty. What 2 year old has to go through this kind of ‘torture?’ Anyway, we survived, and both got a hot bath as soon as we walked in the door.
The eye doctor wants to follow up with the patching in a month...they won't have to examin his optic nerves so it should be less stressful! And I've already repacked the diaper bag with more appropriate attire.
Later in the already busy week we showed up at speech therapy on the WRONG DAY!! I almost cried...we just hopped back in the car and drove the 40 minutes home only to return the next day for our correct time. We are so looking forward to the weekend!
Jack's braces are ready! We go to pick them up on Monday -- woo hoo!
I cannot believe next week is Thanksgiving -- where are the weeks going????
Tuesday, November 15, 2005
Prematurity Awareness Day is TODAY!
Honor Jack Through The March of Dimes
During November – Prematurity Awareness Month –
Help Send a Message of Hope for Premature Babies
Babies are in crisis today. Nearly half a million are born prematurely every year and the number is rising. Premature birth is the number one killer of newborns and a major cause of serious health problems. It costs society billions of dollars every year. That is why the March of Dimes has designated November as Prematurity Awareness Month - to let us know that premature birth is a crisis in our country and to bring people together to help give all babies their 9 months.
The March of Dimes is leading a national effort to save babies from premature birth by funding research to find the causes and by supporting local programs that offer hope and help to families with a baby in intensive care.
In November, visit www.marchofdimes.com and find out what you can do for pink and blue to help prevent premature birth. You can show you care by wearing pink and blue, raising awareness with wristbands, car magnets and ribbons. You can spread the word about the problem of prematurity by sending e-mails and letters. You can help pink and blue sweep the nation by organizing local events like pink + blue Jeans for Babies®. Visit www.marchofdimes.com for more ways to help give all babies their 9 months during November – Prematurity Awareness Month – and any time of year.
Thursday, November 10, 2005
A Difficult Week
Our family has had a great loss this week. Sadly, Nana Wilhelm passed away on Sunday, November 6th, 2005. We will miss her dearly. She loved her children, grandchildren and her great grandchild -- which is Jack. Services were held yesterday -- it was a beautiful dedication to a wonderful lady. We miss you Nana!
Edited to add another picture. This one is of Great Grandma Olga and Nana Wilhelm holding Jack on his first birthday.
Edited to add another picture. This one is of Great Grandma Olga and Nana Wilhelm holding Jack on his first birthday.
Saturday, November 05, 2005
Cook-ook and Poor Tigger
Jack has a new word. "Cookie" (although he says "Cook-ook") he caught on to that one really quick! His favorite are the EL Fudge Stripes -- he's had many a fudgey smiles this week!
Daddy was away in California last week...we missed him terribly! He's home now and Jack and I are so happy! While daddy was gone we got to spend time with Grammie Tina, Grandpa Bob, Tori and Uncle Ben as well as Grandma Linda and Grandpa Ray!
We also had a play date with Danny, Olivia, Abby and Tony this week. When I get the okay from the mommies I will be sure to post some pictures! Jack was a little cranky -- but ended up having a lot of fun. It was nice to get together with my friends as well - it's been a long time since we've seen each other.
Jack has turned into quite the little singer. His solo debut was "Twinkle Twinkle Little Star" He also thinks it's fun to request this song about a hundred times before bed! It's constantly in my head now. LOL!
We have some sad news too -- Jack's Bouncing Tigger (as seen in the picture) had an unfortunate electrical wiring boo boo and had to be, um, thrown away. Jack doesn't understand where is best friend has gone and continues to search for him in his basket of stuffed animals. Poor Tigger...poor Jack :(
I can't wait to figure out how to post video -- anyone have any tips? Any good (FREE) video hosting sites? Comments welcomed!
Well, time to go clean up before Jack wakes from his nap. I hope everyone enjoys this gorgeous day!
Monday, October 31, 2005
Treat, Treat...
I can't say Jack thoroughly enjoyed his Trick or Treat experience tonight but he was cute none the less. It was warmer tonight so I thought we would sit outside and hand out candy...Well Jack didn't like this idea. He kept pointing to our car saying "go, go, go" and barely looked at the first few trick or treaters. He apparently thought there was more to this Halloween thing than sitting outside. So in we went and Jack started peeking through the screen door at all the kids. He tried to help put candy in the bags but got a little too excited and with his mighty pitching arm threw some candy in the grass! LOL! It only took about a half an hour until we were out of candy. We practiced all week saying "Trick or Treat" but Jack could only come up with "Treat, treat!" that's right Jack -- don't even give someone the chance, demand your treats! LOL!
Thursday, October 27, 2005
OOPS!!
Little did we know that Trick or Treating is MONDAY -- not tonight!! So there Jack and I sat all ready for the kids with Jack in his costume and candy at arm's reach! HA HA HA! Oh well, it was like a dress rehersal I guess!
I added two new photo albums to the photo section. I also numbered them so they are easier to navigate. Please let me know if you have any problems accessing the photos or anything else!
Good night everyone!
I added two new photo albums to the photo section. I also numbered them so they are easier to navigate. Please let me know if you have any problems accessing the photos or anything else!
Good night everyone!
Trick or Treat!
Jack and I are all ready for the trick or treaters this year! We have our bucket of candy and Jack's all ready in his puppy dog costume! I figured this year he'd have more fun anwering the door and staying warm rather than heading out to get candy...the mall is having trick or treating tomorrow and I hope to take him there so he (and MOMMY) can get some treats!
Jack isn't feeling well -- he has a bit of the sniffles. He didn't sleep at all last night! Poor guy. He's only running a slight fever so hopefully it will just be a few days of a runny nose. We canceled speech therapy this morning because neither one of us were in any shape to be up and out so early. We did go for his new braces casting because we really need them to be made as soon as possible. Jack was a little miserable but it went fast and we should have them in about two weeks. The orthotist was able to modify Jack's current braces by heating them and bending the plastic a little so they aren't so tight on his feet. I am relieved that this should work until we get the new ones. Jack chose green and blue dinos for his straps -- although he was eyeing up the trucks again as well. Dinos it is!
Well, must run so we can be ready for the little ghosts and gobblins!
Tuesday, October 25, 2005
Feeding Team and New Braces
Jack had his appointment with the feeding team this morning. We've gotten to know the group of therapists very well and they are all very nice to work with. It's been a struggle for Jack to gain weight but we have run out of calorie boosting ideas! They basically suggested the same things -- adding duocal to every meal, adding butter, and other high calorie toppings to everything, keep up with the pediasure and to try Jack on a new Boost product that's juice based and less filling.
Okay to give you an example of Jack's meals -- here is what I wrote down for what Jack had to eat on Monday:
Okay to give you an example of Jack's meals -- here is what I wrote down for what Jack had to eat on Monday:
7:30 am
¼ cup apple oatmeal (made with Pediasure)
2 strips “veggie” bacon
1 piece Pepperidge Farm French Toast w/butter
1:30 pm
1/2 chicken croquette
Several teaspoons mashed potatoes with chicken gravy
4:00 pm
1 piece of raisin bread
6:30 pm
Philly cheese steak (meat, cheese, peppers – no bun)
About 6 french fries
½ Banana
Drinks:
3 – 8 oz servings Pediasure
8 oz of juice/water/Miralax
Seems like enough food for anyone to get fat on! I hope the little man decides to put on the pounds soon!! I am not worried though because he IS healthy and strong. So he'll just be tall and thin :)
Jack gets casted for a new pair of DAFOs this week. They are going to be hinged at the ankle to allow him to move his ankle a little more freely. It seems almost overnight Jack totally outgrew his first pair! One day they fit and the next day it was like trying to put an elephant's foot into a mouse's shoe! They will take about two weeks to be made -- until then he'll almost have to do without wearing them.
Tomorrow morning Jack has PT -- I am sure she'll be impressed (and amused) by Jack's new rolling abilities. Oh, and last night Daddy took the back off of the computer chair so Jack can actually see where he's going when he's rolling around! Now it's just up to me to remember this fact and not fall off our newly designed computer chair! Ha ha!
Monday, October 24, 2005
Roller Jack
Hello everyone!
It certainly is getting to be cooler these days, isn't it? Jack loves to go for walks -- over the weekend we went to the park and Jack did the sliding board, the merry go round, the swings (of course) and the big climber (that looks like a spider)! It was perfect weather for fun outdoors. He's learning all about leaves and how fun they are to crunch in your hands and throw! We got a puppy dog costume for him so he can hand out candy this year!
We've had a few really busy weeks and it looks like its going to be even more of the same coming up...I am trying to manage our schedule so we get some free time but wow these weeks are just SAILING by!
Jack recently had a neurology appointment -- his neurologist is the BEST! He was glad Jack hasn't had any seizures and for now we're keeping his current dose of Tegretol. He was glad to hear all of Jack's new accomplishments! We had been on a waiting list at HMC for Botox but learned the doctor is leaving so for right now they aren't doing Botox injections. The neuro offered to personally contact his collegue at CHOP so Jack can get in as soon as possible!! I am glad because the sooner we help Jack with some of his tightness the sooner he can get better with his walker!
Jack's therapies are going well -- we do speech and physical therapy once a week, occupational therapy every other week and vision therapy once a month. We still regularly see an orthopaedic surgeon, a neurologist, a neurosurgeon, a developmental dr., his pediatrician, an eye doctor, the feeding team, orthotics, and hand spint therapists! Plus others I may be forgetting at the moment!
Jack is such a chatter box these days. We can get him to repeat so many different words...cup, up, ball, bubble, cat, go, bye, hat, door, ma ma, da da, puppy, diaper, ba ba, medicine, all done, uh oh, no no, light, and many more! Even though he can repeat so many words we are having a hard time getting him to USE the words...he knows what they mean, he can pick out pictures, go get the item but needs us to say the word first...then he'll repeat it. His speech therapist says this is common with kids who have CP. She is pretty sure he's got some form of Apraxia and we're working hard in therapy with him.
Physically Jack is ALL OVER THE PLACE! He uses anything and everything to get around. He mostly scoots on his bottom using his hand. At HMC last week Jack "took off" scooting down the hall and into a completley different waiting area. I was close behind but he wasn't looking back. Dr's were stepping over him and smiling at how determined he was! Jack makes friends anywhere we go -- it's possibly my favorite quality about him. He especially loves other children and will do well in preschool I am sure! Oh, yes, Jack will be starting preschool in March! I am not sure of the details yet -- we have a transition meeting set up on November 12th.
Jack decided the other day to use the computer chair to walk around the house! It was so cool -- I caught him walking across the dining room and just froze! I had tears in my eyes. Watching my "baby" using his two little legs to get across the room was amazing!!
Well, I should wrap this up for now. I am sure there's so much I left out -- but hey if I think of it I will update later.
Have a great afternoon!
Saturday, October 22, 2005
Welcome to Jack's Blog
Welcome to our new home! I've decided to change to a "Blog" style. Blog is short for Web Log...basically it serves as a place to share information and comments in a journal style web page. I am still new at this so check back often for new posts, links, pictures and of course updates on Jack!
Please, feel free to e-mail me with any questions. I will be posting an update on Jack soon!
Please, feel free to e-mail me with any questions. I will be posting an update on Jack soon!
Thursday, August 11, 2005
Going to CHOP's CP Clinic was the BEST decision we have made regarding Jack's medical care. I cannot describe how great it was -- it's hard to put into words!
Jack was the best kid EVER that day. The car ride went smoothly, no traffic, found the hospital and parking area with ease....even had time to get a snack and sit for a little before the appointment.
First, we saw the OT and she feels Jack should be wearing a hard (custom made) splint on his right hand to sleep at night. She gave us specific stretches to help keep Jack's range of motion and was overall very informative! She said when we do Botox, Jack should have increased OT for a few weeks following in a hospital setting. So when we go for ST next week I will be asking about OT as well. I think Jack had a mini crush on the OT -- she even let Jack keep one of her balls for the rest of the visit!
The PT was next. We LOVED HIM!! Jack doesn't usually do well during rigorous physical examinations. He hates being stretched and measured and HATES lying down on exam tables. For some reason Jack was totally fine during the exam. They got a good look at Jack's muscles and he was showing off his skills and overall just charming the pants off everyone. The PT feels Jack should get Botox in his arm and legs. He feels we should get Jack his own walker (right now we're borrowing one). He suggested the same type of walker (a reverse K) but adding on a flat arm support for his right arm. He feels with that support Jack will be able to push off with his elbow and spend less time concentrating on holding on with his right hand. He said with a new walker Jack should "take off" and we'd "be in trouble" LOL LOL!!!
We then saw the ortho. Jack had an x-ray of his hips when we first arrived. The ortho pulled up his x-ray on the computer and said everything looks GREAT! He was a gentle man. A little quirky, but very nice and thorough. I asked his opinion on Jack's type of CP. I mentioned that he seems to have involvement in both legs and the label hemiplegia doesn't seem to fit perfectly. He said yes, Jack does have mild involvement in his left leg as well and he would consider Jack to have diplegia and hemiplegia or we could call it triplegia. It was great to have someone answer HONESTLY and not just go with the hemi label. The ortho then went on to lament about labels, and how it doesn't really matter what we call it and I reminded him that as a parent we wish to know EVERYTHING about our kids. I want terms. I want technical information, etc., etc. It was again NICE to have someone treat the parents as a part of the team. He was great and we plan on following up with CHOP's CP clinic every six months. We'll keep all of our specialists at Hershey except the ortho stuff. Anything ortho related we are going to go to CHOP.
The ST was last and Jack was spent by this time. He didn't 'perform' for her but I was able to ask some questions and get some input. She feels we should continue with a wide range of speech therapy. She feels we should concentrate on sound production. I told her Jack was great at making the "B" sound...so she said we should go throughout our day and concentrate on the letter B...and so on as he does have a few sounds he's consistent with. She also said we should continue to work on the concept of give and take. She was encouraged that Jack can repeat some words and word approximations and wasn't too, too concerned about his lack of consistency. Like the other week, he said truck but hasn't said it since. This morning he said Na na (for banana) but who knows if we'll get it tomorrow? She also explained a little more in detail how to use switches. We are set up with the lending library and can rent communication devices. She said we should rent the basic one button switch again (we had it for 6 weeks but had no idea what to DO with it). She explained it's not about motor skills (I was confused because why would Jack need to use a switch if he can point?) but she said there is something that needs to click for Jack on a very fundamental level. So we should not program the switch to say anything at this point. We should set up two switches with two choices behind them. Use things that Jack does NOT have words for yet. Let's say blocks and cups (two favorite toys these days). We would put one switch in front of the blocks and the other in front of the cups. Jack needs to physically make a selection by pressing the switch for the item he wants. It never really clicked until she explained it that way. She said we can't move on until we do this step...that this will help build a strong foundation of the concept of communication. Yes, Jack can press even the tiniest of buttons, yes, he can say some words, and yes, he can point. But using the switches aren't about any of those things (like I had originally been a little insulted because I thought Jack was too advanced for those)....but I now realize it's the physical act of making a choice that's important. Whew, sorry, that was LONG! I hope this makes sense!
We left with a great feeling -- and like I mentioned before I am SO GLAD we decided to go.
Jack was the best kid EVER that day. The car ride went smoothly, no traffic, found the hospital and parking area with ease....even had time to get a snack and sit for a little before the appointment.
First, we saw the OT and she feels Jack should be wearing a hard (custom made) splint on his right hand to sleep at night. She gave us specific stretches to help keep Jack's range of motion and was overall very informative! She said when we do Botox, Jack should have increased OT for a few weeks following in a hospital setting. So when we go for ST next week I will be asking about OT as well. I think Jack had a mini crush on the OT -- she even let Jack keep one of her balls for the rest of the visit!
The PT was next. We LOVED HIM!! Jack doesn't usually do well during rigorous physical examinations. He hates being stretched and measured and HATES lying down on exam tables. For some reason Jack was totally fine during the exam. They got a good look at Jack's muscles and he was showing off his skills and overall just charming the pants off everyone. The PT feels Jack should get Botox in his arm and legs. He feels we should get Jack his own walker (right now we're borrowing one). He suggested the same type of walker (a reverse K) but adding on a flat arm support for his right arm. He feels with that support Jack will be able to push off with his elbow and spend less time concentrating on holding on with his right hand. He said with a new walker Jack should "take off" and we'd "be in trouble" LOL LOL!!!
We then saw the ortho. Jack had an x-ray of his hips when we first arrived. The ortho pulled up his x-ray on the computer and said everything looks GREAT! He was a gentle man. A little quirky, but very nice and thorough. I asked his opinion on Jack's type of CP. I mentioned that he seems to have involvement in both legs and the label hemiplegia doesn't seem to fit perfectly. He said yes, Jack does have mild involvement in his left leg as well and he would consider Jack to have diplegia and hemiplegia or we could call it triplegia. It was great to have someone answer HONESTLY and not just go with the hemi label. The ortho then went on to lament about labels, and how it doesn't really matter what we call it and I reminded him that as a parent we wish to know EVERYTHING about our kids. I want terms. I want technical information, etc., etc. It was again NICE to have someone treat the parents as a part of the team. He was great and we plan on following up with CHOP's CP clinic every six months. We'll keep all of our specialists at Hershey except the ortho stuff. Anything ortho related we are going to go to CHOP.
The ST was last and Jack was spent by this time. He didn't 'perform' for her but I was able to ask some questions and get some input. She feels we should continue with a wide range of speech therapy. She feels we should concentrate on sound production. I told her Jack was great at making the "B" sound...so she said we should go throughout our day and concentrate on the letter B...and so on as he does have a few sounds he's consistent with. She also said we should continue to work on the concept of give and take. She was encouraged that Jack can repeat some words and word approximations and wasn't too, too concerned about his lack of consistency. Like the other week, he said truck but hasn't said it since. This morning he said Na na (for banana) but who knows if we'll get it tomorrow? She also explained a little more in detail how to use switches. We are set up with the lending library and can rent communication devices. She said we should rent the basic one button switch again (we had it for 6 weeks but had no idea what to DO with it). She explained it's not about motor skills (I was confused because why would Jack need to use a switch if he can point?) but she said there is something that needs to click for Jack on a very fundamental level. So we should not program the switch to say anything at this point. We should set up two switches with two choices behind them. Use things that Jack does NOT have words for yet. Let's say blocks and cups (two favorite toys these days). We would put one switch in front of the blocks and the other in front of the cups. Jack needs to physically make a selection by pressing the switch for the item he wants. It never really clicked until she explained it that way. She said we can't move on until we do this step...that this will help build a strong foundation of the concept of communication. Yes, Jack can press even the tiniest of buttons, yes, he can say some words, and yes, he can point. But using the switches aren't about any of those things (like I had originally been a little insulted because I thought Jack was too advanced for those)....but I now realize it's the physical act of making a choice that's important. Whew, sorry, that was LONG! I hope this makes sense!
We left with a great feeling -- and like I mentioned before I am SO GLAD we decided to go.
Tuesday, July 26, 2005
Hello! I actually have a moment to tell you all what's been going on! I updated with three journal entries today and am going to go add some pictures too!
Since Saturday Jack has been pulling up to stand and CRUISING the furniture!!!!!!
It's amazing -- I can hardly believe my eyes!
Jack had PT this morning and she could hardly believe her eyes either. She feels Jack will be on his way to walking independently with no need for equipment (walker, etc.) in the future. She even talked about getting him a shoe insert for his left foot and keeping the DAFO for his right foot.
Someone pinch me -- I think I may be dreaming!!
Jack has never progressed this fast -- it's always taken months to pick up a new gross motor skill. I can't believe he put it all together so quickly. He can even get out of standing rather safely too!
Yesterday we had a WIC appointment and he pulled to stand and played with the other kids at one of those play tables with the wooden beads.
When we parked at the WIC office we had to park on the busy road and put money in the meter. At the red light there was a HUGE mac truck and Jack was in awe. I told him "WOW, look at that big truck Jack!" and he smiled and couldn't take his eyes away from it. After our appointment we went out to the car and he looked out into the street and said "Tuck." He remembered and was looking for the big truck and actually SAID the word! LOL, I am simply giddy!
I just had to share our amazing moments!
Since Saturday Jack has been pulling up to stand and CRUISING the furniture!!!!!!
It's amazing -- I can hardly believe my eyes!
Jack had PT this morning and she could hardly believe her eyes either. She feels Jack will be on his way to walking independently with no need for equipment (walker, etc.) in the future. She even talked about getting him a shoe insert for his left foot and keeping the DAFO for his right foot.
Someone pinch me -- I think I may be dreaming!!
Jack has never progressed this fast -- it's always taken months to pick up a new gross motor skill. I can't believe he put it all together so quickly. He can even get out of standing rather safely too!
Yesterday we had a WIC appointment and he pulled to stand and played with the other kids at one of those play tables with the wooden beads.
When we parked at the WIC office we had to park on the busy road and put money in the meter. At the red light there was a HUGE mac truck and Jack was in awe. I told him "WOW, look at that big truck Jack!" and he smiled and couldn't take his eyes away from it. After our appointment we went out to the car and he looked out into the street and said "Tuck." He remembered and was looking for the big truck and actually SAID the word! LOL, I am simply giddy!
I just had to share our amazing moments!
Friday, July 22, 2005
Wow -- what a week this has been! We had one or two appointments a day the ENTIRE week! I have never been so glad to see the weekend!
Jack had his EEG yesterday. First, it was torture for Jack. They wrapped him in a hospital sheet like a burrito and taped it tightly...it took the woman forever and a day to actually get the leads glued to Jack's head. Jason and I had to lay over Jack to keep him still for almost two hours. Jack screamed like I have never seen him scream before. He even bit his lip and was bleeding.. Jack did calm down but was still sobbing during the test. Jason said it must have felt like being abducted by aliens...such a strange environment -- not painful but plenty scary for Mr. Jack. I remember going through the same ordeal last year but Jack was much more aware of what was going on this year.
We met with his neuro right after. He said Jack's EEG looked much better this year. He said there's still slight activity but it's only here and there vs. constant like last year. He felt Tegretol was really good for Jack so we'll continue to keep him on it (he said for a few years in his opinion). I am grateful that the medication is working! We upped his dosage by 1 ml because Jack is almost 24 lbs (YAY!!!) and the levels we had taken on Monday were a little low. We'll go for labs in two weeks and then again in 6 weeks.
Now the unexpected and most exciting part of our visit with the neuro. The Dr. was asking me what Jack is doing gross motor wise and other areas. He was THRILLED to hear of Jack's progress since our last visit (4 months ago)...then the strangest, most beautiful statement came from the neuro. "He will walk." just like that. We didn't ask -- he just came out with it. Jason and I looked at each other like did we hear that just leave his mouth? Jason said "Wow, no one's ever said it as straight forward before" and the neuro went on to explain how Jack has the strength and ability and he feels it'll be soon (and not years like I was thinking). Jack was being very charming and engaging the neuro in "Jack speak" and we were explaining how Jack will mimic words or word approximations like if I ask him where his diapers are he'll repeat "per, per" or "pie per" the same with a bunch of other words. All of this happened in the span of a week....it's an exciting time for us right now. The neuro said he feels Jack will do well and it will come with time.
I can't tell you how scared I have been in the past few weeks. Jack was making progress but I had a lot of his therapists put doubts in my mind -- I won't go there now, as already Jack's proving them wrong! LOL. The last week or two was a virtual developmental explosion! I still can't believe it when I see Jack pulling up on everything, even using the walls and the front door.
We also discussed Botox with the neuro and he wrote a referral to a colleague of his that does botox injections. He felt now is the PERFECT time for botox. It'll probably be several weeks until we can get in for an appointment so in the meantime I would love to hear anything and EVERYTHING you know about botox!
Thanks for reading everyone -- I am so excited to share our great news. I will keep you posted on how Jack's doing!
Pictured is Jack pulling up to pet the puppy! (or as Jack says pa-pay) oh, and I don't know what's up with using his placemat under his legs...lol...he must have thought it would help.!
Jack had his EEG yesterday. First, it was torture for Jack. They wrapped him in a hospital sheet like a burrito and taped it tightly...it took the woman forever and a day to actually get the leads glued to Jack's head. Jason and I had to lay over Jack to keep him still for almost two hours. Jack screamed like I have never seen him scream before. He even bit his lip and was bleeding.. Jack did calm down but was still sobbing during the test. Jason said it must have felt like being abducted by aliens...such a strange environment -- not painful but plenty scary for Mr. Jack. I remember going through the same ordeal last year but Jack was much more aware of what was going on this year.
We met with his neuro right after. He said Jack's EEG looked much better this year. He said there's still slight activity but it's only here and there vs. constant like last year. He felt Tegretol was really good for Jack so we'll continue to keep him on it (he said for a few years in his opinion). I am grateful that the medication is working! We upped his dosage by 1 ml because Jack is almost 24 lbs (YAY!!!) and the levels we had taken on Monday were a little low. We'll go for labs in two weeks and then again in 6 weeks.
Now the unexpected and most exciting part of our visit with the neuro. The Dr. was asking me what Jack is doing gross motor wise and other areas. He was THRILLED to hear of Jack's progress since our last visit (4 months ago)...then the strangest, most beautiful statement came from the neuro. "He will walk." just like that. We didn't ask -- he just came out with it. Jason and I looked at each other like did we hear that just leave his mouth? Jason said "Wow, no one's ever said it as straight forward before" and the neuro went on to explain how Jack has the strength and ability and he feels it'll be soon (and not years like I was thinking). Jack was being very charming and engaging the neuro in "Jack speak" and we were explaining how Jack will mimic words or word approximations like if I ask him where his diapers are he'll repeat "per, per" or "pie per" the same with a bunch of other words. All of this happened in the span of a week....it's an exciting time for us right now. The neuro said he feels Jack will do well and it will come with time.
I can't tell you how scared I have been in the past few weeks. Jack was making progress but I had a lot of his therapists put doubts in my mind -- I won't go there now, as already Jack's proving them wrong! LOL. The last week or two was a virtual developmental explosion! I still can't believe it when I see Jack pulling up on everything, even using the walls and the front door.
We also discussed Botox with the neuro and he wrote a referral to a colleague of his that does botox injections. He felt now is the PERFECT time for botox. It'll probably be several weeks until we can get in for an appointment so in the meantime I would love to hear anything and EVERYTHING you know about botox!
Thanks for reading everyone -- I am so excited to share our great news. I will keep you posted on how Jack's doing!
Pictured is Jack pulling up to pet the puppy! (or as Jack says pa-pay) oh, and I don't know what's up with using his placemat under his legs...lol...he must have thought it would help.!
Tuesday, July 05, 2005
We had a great time at the beach. Jack did so many new things!
He LOVED the ocean and the sand. While playing in the sand he started digging and filling his dump truck and then would hand the digger to daddy!!! He did try to eat the sand once but he learned it's very yucky in the mouth!
Every day he ate breakfast overlooking the ocean -- and I have to wonder if he thought that was our new dining room!! LOL (hey ma, I love what you've done with the place!)
The boardwalk was another favorite. He loved the tram cars and the seagulls! We took him into an arcade and he sat right on top of the skiball lane and attempted to throw the balls to get points. Almost every day for lunch he ate a HUGE slice of pizza guess I'll be running for slices too! ha ha.
Jack was 'talking' so much too!!! Grandpa Bob was playing monster with Jack and would growl and Jack would growl back...soon after every time Jack would see Grandpa Bob he would growl at him! too cute!
Saturday, June 18, 2005
HAPPY FATHER'S DAY to all the daddies and grandpas out there!!! First, I have added some new pictures in the June 2005 album! Jack and I are both exhausted these days. We've had one or more appointments every day last week and this week...and the next few weeks are looking to be more of the same! AND on top of that. our ISFP is being renewed -- boy I can't wait until we can catch a break! The Baclofen is providing a nice difference in tone. For Jack's low tone areas I haven't noticed ANY difference (which is a good thing!!) and to give you a good example of how his high tone areas are doing, this week at speech therapy the SLP stood Jack at a table (he did NOT have his DAFO's on because our SLP also does NDT massage). I was cringing because I don't like to see Jack stand without DAFO's -- until I noticed his feet were FLAT on the ground!! Now his ankles fell in like normal and it's not like he's cured of his tonal issues, but boy was it a shock to see him standing flat footed instead of on his toes or on the tops of his feet. I also noticed a difference in his right arm and hand right away. He still has spasticity and tightness but the Baclofen is helping! Jack pulled to stand at the coffee table again...this time it was such a smooth, effortless motion that I nearly fell over! He's doing very well. He's been stubborn with his walker lately...like collapsing his body on purpose or refusing to put his feet on the ground so I can't let go! Mr. Smarty pants! I think he needs a break too. We've spent a lot of time swimming last week. Jack LOVES the pool! I hope to get him in the water several times a week this summer. Jack's new SLP has started working with Jack using a picture exchange system. It's to help facilitate communication. There's a small wooden board with Velcro attached and you place small icons pictures on it. We've been working with the icon for bubbles, cheerios, ball, chocolate chip and lotion. Each time Jack wants something (we only do one picture at a time right now) he has to take the picture off the board and hand it to me or the therapist. Then he gets whatever was on the picture. The problem I have with the system we are using is the pictures are abstract. They are cartoon like drawings and I don't think Jack understands what the pictures are. I found a similar system on one of my catalogs called "Elliecards" and they use REAL photographs. Unfortunately the set costs $280.00! If this picture exchange system really works for Jack I may consider the "Elliecards." Since we're just working on a few pictures right now I may try to make my own...I would love to hear from you if you're familiar with using PECS (Picture Exchange Communication System). We are hoping that with practice Jack will learn the give and take of communication and in the mean time ease his ever growing frustration when we don't know what he wants or needs! We are looking forward to our beach trip coming up in a few weeks. I so need a vacation! We all do! I hope everyone is having a great start to summer. I will update again soon!
Tuesday, May 31, 2005
The appointment with the Developmental Clinic went very well. There was an educational/developmental therapist, a resident doctor and the developmental doctor. They examined and observed Jack (who did very, very well considering he normally cries at dr's offices these days). They asked a bunch of questions and we got a lot of positive and helpful feedback. Basically our goal was to be sure we were doing everything we can to help Jack (appropriate therapies, specialists, etc.) They commended us on how great we were doing with everything (and I'll tell you it helps so much when the dr recognizes the parents' efforts).
The doctor prescribed Oral Baclofen (a muscle relaxant) to help with Jack's tightness -- she feels he'll be on his way to walking with relieving some of the spasticity. I have read mixed reviews about Baclofen but am willing to give it a try.
She also mentioned hippotherapy (horseback riding) (YAY -- I wanted to do this) and constraint therapy (also have been interested in trying this as well). With constraint therapy (it's not as harsh as it sounds) we would systematically get Jack to use his right hand more and more by limiting the use of his left hand for very short periods of time throughout the day.
It was very informative and has given me TONS to think about. It's nice to know that there are many options for helping Jack. (and yes, the picture is one of Mr. Jack trying to escape out the front door).
Thursday, May 26, 2005
We started working with a new SLP at the med center. This was our third visit and first full session (the first two were filling out evals and paperwork).
I cannot express how much I LOVE what he's doing for Jack. I have NEVER seen Jack respond so well to anyone this quickly before. And it's also the first male therapist we've ever worked with.
A few things he did that were totally cool...
He warmed Jack up by playing some games like peek-a-boo and funny faces (I know we're trying to get Jack to imitate the faces, but right now Jack was sitting back and letting the SLP entertain him)
He held Jack while he did some oral stimulation and deep pressure massage...
He bounced Jack up and down (and Jack LOVED this)
He put Jack in his stroller and ran with him around the therapy room (all the while Jack is shrieking with laughter). Using this technique he got Jack to repeat the word "GO" at the end of "Ready, set, GO!!!!!!!!!!!" So he would say "Ready, Set" and Jack would ever so softly say "Go" it made me cry!!!!!!!!!!
We also worked with the picture exchange system. We used cheerios and a picture icon of cereal. This was to work on the basic give and take of communication. Jack did well with this. Next week I am bringing some chocolate chips (or other small super treat) to use. And we'll only use them during therapy. I like this idea.
I told him I was so relieved to be working with him and also told him he got more reaction out of Jack in three weeks than some others have in nearly two years. He said not to sell myself short and to pat hubby and I on our backs for a job well done with Jack.
We'll continue once a week. Imagine, if he got Jack to use a new word already what will happen a few weeks from now!!!!!!!!!
I also went back and added pictures to past journal entries -- be sure to check them out!!
I cannot express how much I LOVE what he's doing for Jack. I have NEVER seen Jack respond so well to anyone this quickly before. And it's also the first male therapist we've ever worked with.
A few things he did that were totally cool...
He warmed Jack up by playing some games like peek-a-boo and funny faces (I know we're trying to get Jack to imitate the faces, but right now Jack was sitting back and letting the SLP entertain him)
He held Jack while he did some oral stimulation and deep pressure massage...
He bounced Jack up and down (and Jack LOVED this)
He put Jack in his stroller and ran with him around the therapy room (all the while Jack is shrieking with laughter). Using this technique he got Jack to repeat the word "GO" at the end of "Ready, set, GO!!!!!!!!!!!" So he would say "Ready, Set" and Jack would ever so softly say "Go" it made me cry!!!!!!!!!!
We also worked with the picture exchange system. We used cheerios and a picture icon of cereal. This was to work on the basic give and take of communication. Jack did well with this. Next week I am bringing some chocolate chips (or other small super treat) to use. And we'll only use them during therapy. I like this idea.
I told him I was so relieved to be working with him and also told him he got more reaction out of Jack in three weeks than some others have in nearly two years. He said not to sell myself short and to pat hubby and I on our backs for a job well done with Jack.
We'll continue once a week. Imagine, if he got Jack to use a new word already what will happen a few weeks from now!!!!!!!!!
I also went back and added pictures to past journal entries -- be sure to check them out!!
Saturday, May 21, 2005
TWO updates in one day -- WOW!
Right after I got done updating about Jack getting to sitting last night -- I went to the kitchen to get a drink.
When I came back guess who was hanging off the edge of the coffee table??!?!?!?!?
JACK PULLED TO STAND!!!!!!!!! All by himself!!!!!
Now it wasn't pretty and he was hanging on with his left hand and his neck and his legs were every which way (but it was still the MOST amazing sight)
I rushed to get daddy so he could see and Jack started gagging (because of his neck being on the edge of the table) we 'rescued' Jack and had the BIGGEST party EVER!!!
Jack has pulled to stand before but it was always with help and always with tons of begging/pleading/bribing...for some reason in the past few days it's all FINALLY sinking in. When I had left to get my drink Jack was on his back in the middle of the living room...it was such a joyous shock to see him upright (sort of) at the coffee table. It meant it was all HIS idea and HIS desire to be upright. Not something he was doing because mommy or daddy or the PT was pushing for it.
It's honestly like being part of a miracle. I still have goose bumps!!!
Thanks for helping us celebrate these amazing moments. I know no one gets it as much as you guys!
Right after I got done updating about Jack getting to sitting last night -- I went to the kitchen to get a drink.
When I came back guess who was hanging off the edge of the coffee table??!?!?!?!?
JACK PULLED TO STAND!!!!!!!!! All by himself!!!!!
Now it wasn't pretty and he was hanging on with his left hand and his neck and his legs were every which way (but it was still the MOST amazing sight)
I rushed to get daddy so he could see and Jack started gagging (because of his neck being on the edge of the table) we 'rescued' Jack and had the BIGGEST party EVER!!!
Jack has pulled to stand before but it was always with help and always with tons of begging/pleading/bribing...for some reason in the past few days it's all FINALLY sinking in. When I had left to get my drink Jack was on his back in the middle of the living room...it was such a joyous shock to see him upright (sort of) at the coffee table. It meant it was all HIS idea and HIS desire to be upright. Not something he was doing because mommy or daddy or the PT was pushing for it.
It's honestly like being part of a miracle. I still have goose bumps!!!
Thanks for helping us celebrate these amazing moments. I know no one gets it as much as you guys!
Friday, May 20, 2005
Jack's been working SO HARD on getting to a sitting position for the past few weeks. He did it once and then all of a sudden yesterday he did it 100 times or more!!! YAY JACK!!!!! It's so neat to watch and it's given me a glimpse into what else he may have in store (like pulling to stand without assistance) I am so P-R-O-U-D of my hard working man!!!!!
Last week Jack had a play date with Olivia! The kids (and mommies) had so much FUN! I added a bunch of pictures from that day to the Spring 2005 album.
Jack is taking swimming lessons and loving it! He goes every Friday and gets so excited as soon as he smells the chlorine...he starts hopping in my arms saying "Oooh, ooh" almost like hurry up slow poke I want to SWIM!!! He does very well swimming and loves to splash of course!
Jack also started a speech therapy program at The Med Center. We REALLY like the recent addition to our team. He's way cool and Jack took to him right away. We'll go there once a week (and will probably be adding some others as we begin to transition out of the home based therapy program).
We took a tour of Jack's pre-school that he will attend next year. It looks like a wonderful place. They have EVERYTHING to content small children and the staff was very nice. The great thing about this school is it's a pre-school for both typical kids and kids with disabilities working in the same classroom. I can't believe it's going to be here before we know it!
We are gearing up for SUMMER -- just got to get rid of these colder days! Jack loves his new jogging stroller and loves to sit outside. He'd stay out there all day if he could.
Jack's doing well and is so happy lately. He's such a joy to be around and makes me laugh every day. We have a great time together!
Last week Jack had a play date with Olivia! The kids (and mommies) had so much FUN! I added a bunch of pictures from that day to the Spring 2005 album.
Jack is taking swimming lessons and loving it! He goes every Friday and gets so excited as soon as he smells the chlorine...he starts hopping in my arms saying "Oooh, ooh" almost like hurry up slow poke I want to SWIM!!! He does very well swimming and loves to splash of course!
Jack also started a speech therapy program at The Med Center. We REALLY like the recent addition to our team. He's way cool and Jack took to him right away. We'll go there once a week (and will probably be adding some others as we begin to transition out of the home based therapy program).
We took a tour of Jack's pre-school that he will attend next year. It looks like a wonderful place. They have EVERYTHING to content small children and the staff was very nice. The great thing about this school is it's a pre-school for both typical kids and kids with disabilities working in the same classroom. I can't believe it's going to be here before we know it!
We are gearing up for SUMMER -- just got to get rid of these colder days! Jack loves his new jogging stroller and loves to sit outside. He'd stay out there all day if he could.
Jack's doing well and is so happy lately. He's such a joy to be around and makes me laugh every day. We have a great time together!
Wednesday, April 20, 2005
We had a followup appointment at the feeding clinic yesterday. Our primary reason for seeing the feeding team is poor weight gain/failure to thrive. Last appointment (3 months ago) the dietician said she felt Jack would gain more weight if he had more liquids in his diet. She prescribed duocal and set our liquid goal at 5 cups (40 oz) per day. This goal seemed so outrageous to me and it felt like we were being 'set up to fail.' Six weeks after our appointment we had a weight check. Jack was gaining (although he wasn't even close to 40 oz per day! He gained almost a pound in six weeks!!! She calculated him gaining about 4 grams per day which put us in the 'normal' rage for kids his age. Typically kids gain between 4 and 10 grams per day at Jack's age. I was thrilled that we were on the scale, even if it was at the very bottom!!!
Yesterday Jack weighed in at 22 lbs, 3.3 oz!!!!! He's now gaining TEN GRAMS A DAY!!!! He's at the TOP of the scale!!!! He's taking in 1500 calories a day and drinking about 3 1/3 cups (28 ounces). The dietician was pleased and had no new goals just to keep doing what we've been doing!
The OT and ST that were present were getting on my nerves -- so much so that it nearly made me forget the fact that we are accomplishing our weight gaining goals!!! THey were just annoying me with those comments like "hmmm, Jack doesn't use his righ arm. Do any of his therapists work on that arm?" Um, no...let's see Jack has CP and we get tons of therapy...plus I stay at home with him...nah, we don't work on that arm at all. Plus, they were only seeing him from one angle doing one task. Jack will use both arms (and he keeps amazing me each and every day) just not all the time. So I am trying to just remember the reason we were at the feeding clinic -- to get Jack to gain weight and it's WORKING!!! They said a few other things, but it's not important. We are on top of things with OT and ST. We go back in 4 months -- and after that we may just follow up with the dietician.
So after all of that -- it was very good news! Thanks for reading
Yesterday Jack weighed in at 22 lbs, 3.3 oz!!!!! He's now gaining TEN GRAMS A DAY!!!! He's at the TOP of the scale!!!! He's taking in 1500 calories a day and drinking about 3 1/3 cups (28 ounces). The dietician was pleased and had no new goals just to keep doing what we've been doing!
The OT and ST that were present were getting on my nerves -- so much so that it nearly made me forget the fact that we are accomplishing our weight gaining goals!!! THey were just annoying me with those comments like "hmmm, Jack doesn't use his righ arm. Do any of his therapists work on that arm?" Um, no...let's see Jack has CP and we get tons of therapy...plus I stay at home with him...nah, we don't work on that arm at all. Plus, they were only seeing him from one angle doing one task. Jack will use both arms (and he keeps amazing me each and every day) just not all the time. So I am trying to just remember the reason we were at the feeding clinic -- to get Jack to gain weight and it's WORKING!!! They said a few other things, but it's not important. We are on top of things with OT and ST. We go back in 4 months -- and after that we may just follow up with the dietician.
So after all of that -- it was very good news! Thanks for reading
Wednesday, April 13, 2005
Thoughts of a Mom By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority: A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.
We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the"hospitals, "the" wonder drugs, "the” treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.
We have tolerated inane suggestions and home remedies from well- meaning strangers.
We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.
We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with water colors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, Is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority: A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.
We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the"hospitals, "the" wonder drugs, "the” treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.
We have tolerated inane suggestions and home remedies from well- meaning strangers.
We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.
We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with water colors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, Is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Thursday, April 07, 2005
Jack is doing well -- his new word is APPLE! Although I don't think he knows exactly what an apple is, it's still way too cute when he says it.
We saw Jack's eye doctor last week. He said Jack looks good and doesn't need glasses at this time. We talked about the visual field cut to Jack's right side and both agreed it's still there, but he compensates very well. He asked me if I felt Jack was using one eye more than the other and I told him yes, I felt Jack used his left eye more than his right and the doctor agreed. So we were instructed to patch his left eye several hours a day to make the right eye work harder. So far Jack doesn't like it at all. I actually have to put mittens on his hands so he can't rip the patch off (see attached picture). I've been able to get about 2 hours a day so far. Later in the evening seems to work better than first thing in the morning.
I recently sent out an e-mail about honoring Jack thought the March of Dimes. If you'd like to visit Jack's preemie page through the march of dimes copy and paste the following link.
http://www.marchofdimes.com/howtohelp/b.asp?band_id=761
Jack also had to have blood drawn to see if his level of Tegretol is in its therapeutic range. We haven't gotten the results back yet. He HATES getting blood drawn and I hate it too. Poor fella.
Up until this week we used to rock Jack to sleep at night while we watched tv...however lately he squirms and tries to get down to play so we decided it was time to put him to bed on his own. The first night was horrible! He screamed and screamed for 30 minutes (which felt like 30 hours) it broke my heart in pieces but I knew it had to be done. Jack likes to sleep to music so I remembered seeing a little music player that had a little projector in it to show pictures on the ceiling -- I ran to wal-mart yesterday and purchased it. BOY WHAT A DIFFERENCE! Jason and I put Jack in his bed at 9:00 and turned on his little movie and music player and told Jack it was night night time and to have a good time watching his movie. The boy didn't make a PEEP! Although we went in to check on him before he was sleeping -- BIG MISTAKE! He cried for a few minutes but then fell fast asleep. My little baby is growing up -- he doesn't need mommy to rock him to sleep anymore!
I noticed this week that the website owner (babababies) added some nifty things to their websites. Now you can comment on each individual journal entry AND I can add pictures to each journal entry. NEATO!
We are loving the warm weather!! Jason and I got Jack a neat jogging stroller (because he's getting too long for his small stroller) and we all love it. It's 'souped' up with all kinds of things...it's like the Cadillac of strollers! I'll have to get some pictures of Jack in it.
I hope everyone is doing well. Time to put Jack down for his nap (which unlike night night time, he's been going down for naps on his own for almost a year now)!
We saw Jack's eye doctor last week. He said Jack looks good and doesn't need glasses at this time. We talked about the visual field cut to Jack's right side and both agreed it's still there, but he compensates very well. He asked me if I felt Jack was using one eye more than the other and I told him yes, I felt Jack used his left eye more than his right and the doctor agreed. So we were instructed to patch his left eye several hours a day to make the right eye work harder. So far Jack doesn't like it at all. I actually have to put mittens on his hands so he can't rip the patch off (see attached picture). I've been able to get about 2 hours a day so far. Later in the evening seems to work better than first thing in the morning.
I recently sent out an e-mail about honoring Jack thought the March of Dimes. If you'd like to visit Jack's preemie page through the march of dimes copy and paste the following link.
http://www.marchofdimes.com/howtohelp/b.asp?band_id=761
Jack also had to have blood drawn to see if his level of Tegretol is in its therapeutic range. We haven't gotten the results back yet. He HATES getting blood drawn and I hate it too. Poor fella.
Up until this week we used to rock Jack to sleep at night while we watched tv...however lately he squirms and tries to get down to play so we decided it was time to put him to bed on his own. The first night was horrible! He screamed and screamed for 30 minutes (which felt like 30 hours) it broke my heart in pieces but I knew it had to be done. Jack likes to sleep to music so I remembered seeing a little music player that had a little projector in it to show pictures on the ceiling -- I ran to wal-mart yesterday and purchased it. BOY WHAT A DIFFERENCE! Jason and I put Jack in his bed at 9:00 and turned on his little movie and music player and told Jack it was night night time and to have a good time watching his movie. The boy didn't make a PEEP! Although we went in to check on him before he was sleeping -- BIG MISTAKE! He cried for a few minutes but then fell fast asleep. My little baby is growing up -- he doesn't need mommy to rock him to sleep anymore!
I noticed this week that the website owner (babababies) added some nifty things to their websites. Now you can comment on each individual journal entry AND I can add pictures to each journal entry. NEATO!
We are loving the warm weather!! Jason and I got Jack a neat jogging stroller (because he's getting too long for his small stroller) and we all love it. It's 'souped' up with all kinds of things...it's like the Cadillac of strollers! I'll have to get some pictures of Jack in it.
I hope everyone is doing well. Time to put Jack down for his nap (which unlike night night time, he's been going down for naps on his own for almost a year now)!
Saturday, March 26, 2005
Jack has TWO words that came out of nowhere today!!!!! My baby has WORDS!!!!! Can you believe it????
"UP" and "CAT" both with real meaning!!!!
He will use "BABA" for drink -- ST says it's A-OK for now
He will repeat but not use Dada, Mama, Ball and Bubble
I have been petrified lately about having NO words...we can only go forward from here. He's soooo proud when he uses them too! Right now I'm happy and busy celebrating!!!!!
"UP" and "CAT" both with real meaning!!!!
He will use "BABA" for drink -- ST says it's A-OK for now
He will repeat but not use Dada, Mama, Ball and Bubble
I have been petrified lately about having NO words...we can only go forward from here. He's soooo proud when he uses them too! Right now I'm happy and busy celebrating!!!!!
Wednesday, March 23, 2005
Sunday, March 20, 2005
Our neurology appointment went very well. He really listened to everything and had some very sage words of advice too. He referred us to a speech therapy clinic which offers private therapy as well as some other programs. We are also seeing the neurodevelopmental team. He's sending us for a repeat EEG in July with an appointment following so he can read the results to us immediately. He upped Jack's dosage of Tegretol and will send us for blood work in 4 weeks. So luckily we did not have to go to the lab that day!
I had a MAJOR SCARE at the dietician's office. We went there for a quick weight check and the nurse put Jack on the scale and got his weigh in kilograms -- when she converted it to pounds she told us Jack was 20 lbs 7 oz. 6 weeks ago, when we started the duocal and Pediasure (more than his usual 1 can a day) he weighed in at 20 lbs 8 oz...which meant after all of our hard work he LOST an ounce...I was so upset and worried. I called the dietician this morning (who by the way is a SWEETHEART over the phone ) and expressed my concerns over Jack's loss and no gain with the duocal and Pediasure. Well she redid the calculations and GUESS WHAT!!!!???!!! Jack weighs 21 lbs 4 oz!!!!!!!!!! He averaged a gain of 4 grams a day and kids in his age range should gain between 4-10 grams a day...we are finally on track (even if it's the low end) for gaining. She said she would like to see him gain more -- but was pleased with how he's doing. We got to talking about some of Jack's issues and I mentioned CP and she said she has a 13 year old son with CP. I thought that was interesting. I guess I never figured her to 'get' what our life is like but obviously she must know (on some level) what we go through.
All in all I feel we had a great week of appointments. A lot of information, a lot of referrals and a lot of stress -- but all leading us somewhere. I was so afraid that I would end up hitting that brick wall but to my surprise everyone listened and wrote referral after referral. Wonderful news.
So I assume we'll get quite busy with all of the new paths we must travel but it's okay if it helps me help Jack.
I had a MAJOR SCARE at the dietician's office. We went there for a quick weight check and the nurse put Jack on the scale and got his weigh in kilograms -- when she converted it to pounds she told us Jack was 20 lbs 7 oz. 6 weeks ago, when we started the duocal and Pediasure (more than his usual 1 can a day) he weighed in at 20 lbs 8 oz...which meant after all of our hard work he LOST an ounce...I was so upset and worried. I called the dietician this morning (who by the way is a SWEETHEART over the phone ) and expressed my concerns over Jack's loss and no gain with the duocal and Pediasure. Well she redid the calculations and GUESS WHAT!!!!???!!! Jack weighs 21 lbs 4 oz!!!!!!!!!! He averaged a gain of 4 grams a day and kids in his age range should gain between 4-10 grams a day...we are finally on track (even if it's the low end) for gaining. She said she would like to see him gain more -- but was pleased with how he's doing. We got to talking about some of Jack's issues and I mentioned CP and she said she has a 13 year old son with CP. I thought that was interesting. I guess I never figured her to 'get' what our life is like but obviously she must know (on some level) what we go through.
All in all I feel we had a great week of appointments. A lot of information, a lot of referrals and a lot of stress -- but all leading us somewhere. I was so afraid that I would end up hitting that brick wall but to my surprise everyone listened and wrote referral after referral. Wonderful news.
So I assume we'll get quite busy with all of the new paths we must travel but it's okay if it helps me help Jack.
Sunday, February 27, 2005
I have a cute Jack story...Uncle Ben came over last week for pizza. We haven't seen him in a while so when he came in and said "HI" to Jack, Jack looked him square in the eye and said "Uh Oh" we laughed so hard. Jack's never said "Uh Oh" before and hasn't said it since! I know some of you will find it as amusing as we did!
Jack is learning to stand with his walker. I have to help him by reminding him to hold on and by helping him open and place his right hand. I also fix his feet so he has good balance then I can let go and he's standing like such a big boy! I always clap and exclaim how good he's doing and his smile says it all. He's proud too! I can ask him to step and he'll step once with his left leg. I have to ask him again to step and then I point to his right leg and after building up the nerve and confidence he steps again with the right leg. We then throw a HUGE celebration and I pick him up and spin him around. He LOVES this and we do it over and over. He's so happy and proud to be standing and stepping. The walker is quite light (made of aluminum) and it's amazing that he's just using a little bit of support and can stand for a long time. I think he likes the view too.
I took Jack to Wal-mart to get his 2nd year pictures taken. We got a coupon in the mail for a photo session and a nice big photo package for $3.88!!! No hidden fees -- I just had to sit and let them try to talk me into buying a larger package deal. What an excellent deal! Jack was a ham (of course) and was making everyone laugh at the photo place. I think it's going to be a cute picture. We get them back on March 17th.
We also decided to trade in Jason's black Honda Civic for a MINIVAN!!! I LOVE it. It's great. I used to exclaim that I would NEVER have a minivan -- just didn't see what all the fuss was about. Well, let me tell you, I get it now! We went for groceries yesterday and it was so much easier and less of a hassle to load everything! I also don't bump my head (or Jack's) or break my back trying to get him in and out of his car seat. I can't wait for all of you to check it out! It'll be great for our beach trips this year too!
Jack is learning to stand with his walker. I have to help him by reminding him to hold on and by helping him open and place his right hand. I also fix his feet so he has good balance then I can let go and he's standing like such a big boy! I always clap and exclaim how good he's doing and his smile says it all. He's proud too! I can ask him to step and he'll step once with his left leg. I have to ask him again to step and then I point to his right leg and after building up the nerve and confidence he steps again with the right leg. We then throw a HUGE celebration and I pick him up and spin him around. He LOVES this and we do it over and over. He's so happy and proud to be standing and stepping. The walker is quite light (made of aluminum) and it's amazing that he's just using a little bit of support and can stand for a long time. I think he likes the view too.
I took Jack to Wal-mart to get his 2nd year pictures taken. We got a coupon in the mail for a photo session and a nice big photo package for $3.88!!! No hidden fees -- I just had to sit and let them try to talk me into buying a larger package deal. What an excellent deal! Jack was a ham (of course) and was making everyone laugh at the photo place. I think it's going to be a cute picture. We get them back on March 17th.
We also decided to trade in Jason's black Honda Civic for a MINIVAN!!! I LOVE it. It's great. I used to exclaim that I would NEVER have a minivan -- just didn't see what all the fuss was about. Well, let me tell you, I get it now! We went for groceries yesterday and it was so much easier and less of a hassle to load everything! I also don't bump my head (or Jack's) or break my back trying to get him in and out of his car seat. I can't wait for all of you to check it out! It'll be great for our beach trips this year too!
Tuesday, February 22, 2005
Here is a list of a lot of new things Jack is doing in the last two weeks or so. Some of these we've been working on for OVER A YEAR by now. It feels good that certain things are starting to 'click' for Jack.
• Jack can play patty cake with BOTH HANDS! Upon request…
• He can point to his nose and mouth upon request…
• NO MORE BOTTLE!! Jack has moved on to a straw sippy cup that he sometimes holds on his own for completely independent drinking!!!
• Signs for more
• Can wave bye bye
• Says “Bah” for Ball!!! Only when prompted or reminded
• Says “Bubba” for bubble!!! Only when prompted or reminded
• Is repeating sounds more consistently, like pa pa, ma ma, da da, and ba ba as well as snoring, snorting, coughing and sneezing (he finds these SO FUNNY to repeat!)
• Can pick out objects from a line up like sock, ball, binky, cup, book, paper, etc.
• He can pull to stand very well when placed on his knees
• Is crawling so fast – still on his belly
• Gets back down to sitting position from standing at the furniture
• Can cruise couch without shoes over DAFO’s still won’t budge with shoes on
• Can take steps with hands held
• Jack can play patty cake with BOTH HANDS! Upon request…
• He can point to his nose and mouth upon request…
• NO MORE BOTTLE!! Jack has moved on to a straw sippy cup that he sometimes holds on his own for completely independent drinking!!!
• Signs for more
• Can wave bye bye
• Says “Bah” for Ball!!! Only when prompted or reminded
• Says “Bubba” for bubble!!! Only when prompted or reminded
• Is repeating sounds more consistently, like pa pa, ma ma, da da, and ba ba as well as snoring, snorting, coughing and sneezing (he finds these SO FUNNY to repeat!)
• Can pick out objects from a line up like sock, ball, binky, cup, book, paper, etc.
• He can pull to stand very well when placed on his knees
• Is crawling so fast – still on his belly
• Gets back down to sitting position from standing at the furniture
• Can cruise couch without shoes over DAFO’s still won’t budge with shoes on
• Can take steps with hands held
Friday, February 04, 2005
I took Jack to the pediatrician this morning because he still wasn't feeling well and she said he has an ear infection as well as a cold. So we got some antibiotics and hopefully he'll be on the mend soon. She said it was quite an accomplishment to make it 2 years with no infections and having this be our first prescription for antibiotics was great. So we'll be taking it easy this weekend. Jack is continuing to do well in his DAFO's. I think his muscles are adjusting because he's complaining a bit when I put them on -- but once they are on he doesn't mind them at all. I can't wait until his physical therapist sees him this week! I will keep you posted on how he's doing. Send Jack some get well vibes!!
Thursday, February 03, 2005
I took Jack to get his DAFO braces this morning. He was less than happy to be at the hospital for yet another appointment but was a real trooper considering he's still not feeling well!
Not 10 minutes after I put his DAFOs on Jack CRUISED THE ENTIRE LENGTH OF THE SOFA to fetch a box of tissues. He continued to stand and pull out the tissues one, by one, by one. We have been practicing cruising for almost a year and he would get one or two steps and then his legs would stop working for him. This completely AMAZES me because I was starting to wonder if he actually had the skill -- here it turns out he's probably had the skill for quite some time he only now has the extra support (DAFOs) he needed. I am excited way beyond words right now. We still have so much to work on but boy is this a great boost when his skills were somewhat at a standstill lately -- gross motor wise that is.
Thanks for reading!!!
YAY JACK!!!
Not 10 minutes after I put his DAFOs on Jack CRUISED THE ENTIRE LENGTH OF THE SOFA to fetch a box of tissues. He continued to stand and pull out the tissues one, by one, by one. We have been practicing cruising for almost a year and he would get one or two steps and then his legs would stop working for him. This completely AMAZES me because I was starting to wonder if he actually had the skill -- here it turns out he's probably had the skill for quite some time he only now has the extra support (DAFOs) he needed. I am excited way beyond words right now. We still have so much to work on but boy is this a great boost when his skills were somewhat at a standstill lately -- gross motor wise that is.
Thanks for reading!!!
YAY JACK!!!
Wednesday, February 02, 2005
Jack seems to be feeling a lot better this morning. He's coughing some but doesn't seem to be feeling icky anymore. Last night he ate a good dinner (pizza, tater tots, mixed veggies, peaches and milk) and this morning he had 2 pieces of cinnamon toast and a Danimals drinkable yogurt smoothie. I think I have whatever Jack had...I am not feeling so well today. We canceled therapy for today and will get back into the swing of things next week. I got a phone call yesterday afternoon that Jack's DAFO's are ready and we have our appointment for fitting and instructions tomorrow morning. I am curious to see how Jack reacts to the braces. I know it will be an adjustment at first, but I have hope that he will gain balance and stability and he'll see how much they help him! I've added a new photo album called Jack's Preemie Friends -- you must check it out and see all these cuties! There are 3 right now and I will be adding more as I get them. I talk to their moms through an online forum for parents of preemies.
Tuesday, February 01, 2005
Jack has a cold... and I worry because the last time he got a viral thing he quit eating/drinking and we ended up in the hospital for a couple of days. He's already refusing food and drink but I was able to get a little bit in him regularly yesterday. His doctor said to keep an eye on him, but so far his slight fever (100.5) went down to normal with one dosage of Tylenol and it does not sound like it's in his chest. Please keep your fingers crossed that this passes SOON. This morning Jack is not any better or worse -- he has a close to normal temp now but his congestion seems a little worse...my mom had a huge box of ice-pops in her freezer and was kind enough to bring them over to us yesterday. The first ice-pop didn't go over well. Last night he ate pieces of a grape ice-pop from a bowl...messy but got it in! He is quite cranky but hey, I am too when I am not feeling well! He was worrying me because he really isn't hungry or thirsty but every once in a while he'll take whatever I am offering. This morning it was room temperature white grape juice and diced apples -- and nothing else! But at least it's SOMETHING! I canceled his therapy yesterday and today and hoping he's well enough for tomorrow's session. I will keep you posted!
Thursday, January 27, 2005
An update on my update...I was very happy when I checked my Jell-O and it was 'done' so Jack could have it for part of his snack this afternoon. Well, Jack's never had Jell-O before...the look on his face was PRICELESS! He didn't know what in the world I was feeding him...knew it smelled and tasted good when he licked it, but couldn't understand why it was so cold and slippery. He would get the spoonful in his mouth and then dig it out with his fingers...he did this over and over. He likes it but doesn't quite understand it. We'll work on this too. Ha ha!
Hello everyone! I just wanted to give a quick update on Mr. Jack. He's always been my great eater and he continues to amaze me with what he can pack in his tummy in a day. I guess the dietician's advice felt like criticism, because she never mentioned the good things. I know it's her job, but it's hard not to take it personally! I actually called her and asked for clarification on the 40 ounces of fluid Jack needs in a day. My concern was (and is) filling him up on Pediasure and carnation instant breakfast (which are both basically meals in a can) would lessen his appetite. She said we can give him clear liquids as well such as juice and water, and things like Jell-O and ice cream can count towards his total fluids too. So after mixing a huge batch of Jell-O I feel better knowing I don't have to fill him up with all of those heavy liquids. I've been giving him the Duocal with every meal and offering him more to drink throughout the day. I have to write down what he takes in a day to see if we are meeting our goals. So far he's keeping up with his 3 meals and 2 snacks and getting a little more than 20 ounces of fluid in a day...we'll just keep working at increasing that amount! It does sort of feel like our whole day centers around eating, but Jack's happy and that's all that counts! I will keep you all updated. Thanks for thinking of us!
Tuesday, January 25, 2005
We just got back from the feeding team.
First the great points...the OT and SLP were thrilled with Jack's oral motor skills and they were impressed with his straw and cup (assisted) drinking and lip closure. So they only want to see him in the 'full' clinic in three months.
We will see the dietician monthly. The dietician seemed sort of hardened and as though she likes butting heads with moms of these kiddos. For everything I said she had an opposing argument. I felt like 2 lawyers arguing a case. I stayed very nice and very calm and spoke very clinically about the situation. But inside I was screaming -- this is my CHILD we are talking about here!!
She calculated him at 1250 - 1500 cals a day as to what he takes now. She said he isn't getting anywhere near the required amount of liquids...he gets about 20 oz of fluid a day and she would like him to get 40 oz of fluid a day PLUS his 5 regular meals. It's never going to happen. I will try my best but the more you fill a kid (or anyone) up on liquids, the less solids they'll eat.
What she suggests in addition to the high calorie foods is 40 oz of Pediasure, carnation instant breakfast, carnation juice w/ protein, or whole milk. Plus she wants 2 tsp Duocal for each meal 3-5 times a day.
I am hoping this puts the weight on Jack but it feels like I am being set up to fail. I mean realistically I can't see him taking 3 meals, 2 snacks AND 40 oz of liquid. Like I said, I will certainly try and hope for the best.
She said he's technically 'failure to thrive' and if we needed to use the label to get Pediasure or Duocal we will but it's not in the report at this time. I feel so badly because I feel like it's all my fault because I make all of Jack's food, I sit with him for all of his meals I am the one that gives in or gives up when a meal isn't going smoothly. I am the one that researches high cal recipes, shops for the ingredients, prepares the meal to sometimes watch my precious toddler throw it all on the floor for my already FAT dog to eat. Sigh...
I am not going to let myself get discouraged. We are going to try this 'plan' for a month and see what happens. Thanks for listening!
First the great points...the OT and SLP were thrilled with Jack's oral motor skills and they were impressed with his straw and cup (assisted) drinking and lip closure. So they only want to see him in the 'full' clinic in three months.
We will see the dietician monthly. The dietician seemed sort of hardened and as though she likes butting heads with moms of these kiddos. For everything I said she had an opposing argument. I felt like 2 lawyers arguing a case. I stayed very nice and very calm and spoke very clinically about the situation. But inside I was screaming -- this is my CHILD we are talking about here!!
She calculated him at 1250 - 1500 cals a day as to what he takes now. She said he isn't getting anywhere near the required amount of liquids...he gets about 20 oz of fluid a day and she would like him to get 40 oz of fluid a day PLUS his 5 regular meals. It's never going to happen. I will try my best but the more you fill a kid (or anyone) up on liquids, the less solids they'll eat.
What she suggests in addition to the high calorie foods is 40 oz of Pediasure, carnation instant breakfast, carnation juice w/ protein, or whole milk. Plus she wants 2 tsp Duocal for each meal 3-5 times a day.
I am hoping this puts the weight on Jack but it feels like I am being set up to fail. I mean realistically I can't see him taking 3 meals, 2 snacks AND 40 oz of liquid. Like I said, I will certainly try and hope for the best.
She said he's technically 'failure to thrive' and if we needed to use the label to get Pediasure or Duocal we will but it's not in the report at this time. I feel so badly because I feel like it's all my fault because I make all of Jack's food, I sit with him for all of his meals I am the one that gives in or gives up when a meal isn't going smoothly. I am the one that researches high cal recipes, shops for the ingredients, prepares the meal to sometimes watch my precious toddler throw it all on the floor for my already FAT dog to eat. Sigh...
I am not going to let myself get discouraged. We are going to try this 'plan' for a month and see what happens. Thanks for listening!
Thursday, January 20, 2005
Jack is doing well! We've had a busy few weeks with appointments and it's been so COLD I hate to leave the house. Jack is now crawling faster and faster as well as trying his hardest to pull to stand. He tries to use his upper body without bringing his legs along...we have to remind him that his legs are there to help him! After a few tries (and me supporting him under his butt) it clicks and he finally gets up! He looks so proud when he does it. He can take steps with two hands held and needs less support as the weeks go on. Jack was fitted for DAFOs (dynamic ankle foot orthotics) this morning. They are plastic braces that go right below his knee. Jack wasn’t sure what to make of the casting. They sat him on a table with me sitting next to him and put both legs in plaster casts to create a mold. They cut them off and are sending them away to get his DAFOs made. I am looking forward to getting them because I believe it will make all the difference in his standing, cruising and eventually walking!
Jack has remained seizure free since being put on Tegretol late this summer. He adjusted well to his meds and now knows the drill each morning and evening! We had a check up with his neurosurgeon in December and he only wants to see him back in 9 months time instead of our usual 6 months.
Jack doesn't have any words yet except mama, dada, and baba (for bottle) he has a few signs but isn't consistent with them although just yesterday he constantly made the sign for ‘more’ when he wanted more Goldfish crackers. He understands very much of what we say and I am waiting for what goes in to finally come out! He can follow simple requests like brush hair, pet puppy, where's daddy?, get your sock, etc. One really exciting accomplishment is doing pattycake upon request (WITH BOTH HANDS!!!) For the longest time Jack would completely ignore his right hand but as the weeks go by he uses it more and more. Over Christmas we learned that he can rip paper with two hands. It's so great to see him using both hands together!
He's eating all kinds of table foods -- basically everything we eat. I am so proud of his progress in this area. Even though he eats well and eats high calorie foods he is not growing as well as his pediatrician would like. We went to his ped for a weight and growth check and he weighed in at 20 lbs, 12 oz and 33 inches tall. He is declining slightly on his own growth curve so the ped referred us to the feeding clinic. Our appointment is this coming Tuesday. Please send all the positive thoughts you can for that appointment!
Jack has remained seizure free since being put on Tegretol late this summer. He adjusted well to his meds and now knows the drill each morning and evening! We had a check up with his neurosurgeon in December and he only wants to see him back in 9 months time instead of our usual 6 months.
Jack doesn't have any words yet except mama, dada, and baba (for bottle) he has a few signs but isn't consistent with them although just yesterday he constantly made the sign for ‘more’ when he wanted more Goldfish crackers. He understands very much of what we say and I am waiting for what goes in to finally come out! He can follow simple requests like brush hair, pet puppy, where's daddy?, get your sock, etc. One really exciting accomplishment is doing pattycake upon request (WITH BOTH HANDS!!!) For the longest time Jack would completely ignore his right hand but as the weeks go by he uses it more and more. Over Christmas we learned that he can rip paper with two hands. It's so great to see him using both hands together!
He's eating all kinds of table foods -- basically everything we eat. I am so proud of his progress in this area. Even though he eats well and eats high calorie foods he is not growing as well as his pediatrician would like. We went to his ped for a weight and growth check and he weighed in at 20 lbs, 12 oz and 33 inches tall. He is declining slightly on his own growth curve so the ped referred us to the feeding clinic. Our appointment is this coming Tuesday. Please send all the positive thoughts you can for that appointment!
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