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.

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!

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.!

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!

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!

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).

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!!

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!

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!

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

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.

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)!

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!!!!!

We went to the park yesterday -- it was such a nice day! Jack went on the swings, the sliding board (with my help of course) and the little rocking cars, trucks and motorcycles...

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 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!

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

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!!

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!!!

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.