Trip to the NICU

First Diaper Change!

Morgan's Surprise Arrival!

Angie gave birth to Morgan Leigh Wilhelm on Saturday at 4:54am. At 34 weeks and 1 day, she weighed an impressive 5 pounds and 6 ounces and is doing great. Morgan is currently in the NICU for some rapid breathing and monitoring as well some NG tube feedings. There is a chance that she'll come home with Angie on Tuesday if she eats well enough. Angie is recovering nicely from her C-section and is thankful to be in the same hospital as Morgan. Jack is excited like everybody else and is definitely interested in his new little sister.

Jason

Little Loren

I met Nelba probably close to a year ago. She and her family live in South Africa. She is one of the most insightful bloggers I have met on this journey.

Sadly, her young son Loren passed away today. His journey on Earth has ended. His story will live on through his family. They have touched our lives and words cannot express how sad and shocked I am to hear of his passing.

Please, take a moment to visit Nelba's blog.

My thoughts and prayers are with them.

Very Sick Little Man...

Pneumonia and double ear infection. Sheesh.

Jack was sent home from school yesterday with a fever of 101. My mom brought him home for me and we changed him into his jammies and watched him a little. He had a runny nose for about a week -- with no other symptoms (fever, cranky, etc.) but he developed a chesty cough yesterday.

All night we rotated Motrin and Tylenol and at several times his temp was up to 102+ then this morning at 6:30 (he had BOTH meds in his system) his temp was 104.5! We put him straight in the bath tub and called the ped. His temp came down to 101 after the bath but rose again to 103...when the dr called back she asked how he was doing and at that time he was pretty miserable but holding his own. She said to bring him in to the office when they opened.

Jason is also sick and stayed home today -- thankfully because I don't think I could do this myself at this point.

We're to cycle Tylenol and Motrin for 24-48 hours and give Musinex every 4 hours as well as Augmentin 2x a day. We also got a referral to an ENT because of his recurrent ear infections...our appointment is May 1st.

His breathing is okay -- he has a very wet cough though. Poor sweetie pants....I've never seen him so run down. He's vomited a few times due to coughing so hard.

So we're watching closely and praying for no seizures...

Mel, I am honored and can't wait to do some nominating as well!

Things...

I am running on ZERO sleep. Jack for whatever reason decided to get up for the day at 3:30 am. This is after struggling/fighting to go to sleep last night. He rarely, if ever sleeps through the night. He is still in our bed -- I am too afraid of a seizure striking in the middle of the night and him being all alone and not being able to intervene. Most of the time he wakes up happy which is a good thing, but nights like last night he woke up very upset and insisted on getting up. So we did -- at 3:30 this morning Jack and I were watching the news and eating cheese-its for breakfast...we had soy milk too as to not feel too guilty. I was too tired to make anything else! Several hours later Jack asks for his trio of breakfast foods -- "Nana? Cereal? Bacon?" or to sound it out like Jack "NaaaaNaaaa? SheeSheeShall?, BayBay?" He had his meds and then asked for "Bed" or in Jack speak "Bee?" He ends everything with a question and the longer I wait to respond the more you can hear the pleading in his voice. So he went down for a nap and is still sleeping. I, on the other hand, took time to shower and eat and now I want to sleep too -- but it's soon time for Jack to wake up. Today will simply be a tired day. I look at it as practice for the weeks and weeks of sleepless nights once Miss Morgan arrives! Which will be in 27 days if anyone's counting!

I love this picture -- he looks like he's trying to hold up the house. He shouted at me as if to say do we HAVE to take a picture? I can't hold on much longer!



The Mommy Monster!!

A rare and interesting specimen captured on film....

As for me, I am feeling VERY PREGNANT! I can't get comfortable and just when I do, I have to get up to pee. I have terrible indigestion, gas, constipation and the occasional contraction coupled with karate chops from Morgan!! I love every minute of it though and wouldn't trade it for anything. I count every moment as a blessing -- I am now nearly 34 weeks (tomorrow)!!!!!!

Here are some shots of the room -- almost done!!





Jason is doing well -- I often forget to update on daddy...lol! He's working so hard all week long and then does so much around the house that I wonder how he's still standing some days. I promised him one day soon we'll get a break...may be wishful thinking more than a promise but I think he knows that.

Blogging Against Disabilism Day

May 1st, 2007



We will be participating.

Interested?

Blogging Against Disablism Day

Thanks Jacqui for sharing this!

Spent a few hours at the hospital last night....

Last night after dinner I started having contractions -- not overly painful, but very strong and regular...my tummy would get rock hard from the top all the way to the bottom. I called nurse triage and they felt I should be seen in Labor and Delivery for monitoring especially with my history.

We left around 8:30 and had to take Jack with us -- and he behaved sooo well despite being overly tired. They hooked me up to the monitors and saw my contractions coming every 2 mintues or so. They weren't painful, but I was scared and they weren't exactly comfortable...I gave it a 3 on the 1-10 pain scale.

I was examined interally and absolutely no cervical changes were noted. The baby looked really good and remained active with a strong steady heartbeat...showing no signs of distress.

Around 11:30 I was still having some contractions but they weren't like they were earlier. The dr. said this was all normal and I could go home. He explained how the uterus is a giant muscle and it contracts regularly only I am feeling it because if how much I've grown. He said if I notice ANY CHANGES in the intensity I should come right back or if I notice any blood or discharge.

We got home and I took a warm shower and got in bed. I didn't remember having any contractions while I slept and so far this morning I've had just 3.

I left with instructions on how to do an official fetal kick count (twice daily after breakfast and dinner) and this morning she moved 26 times in 30 minutes and has been quite active...which is a relief.

Jason went to work this morning and my mom is on her way over. I canceled Jack's eye appointment and I plan on resting the entire weekend.

Please pray for no more contractions and an easy 30 some days till Morgan's scheduled arrival!!

MAJOR MILESTONE ALERT!!!

Pinch me -- seriously!

I "tweaked" Jack's walker tonight -- took off the pelvic stabilizer and the right forearm support basically took away the extra supports...because he does well and I wanted to challenge him a little more.

Anyway, I turn for one second to get something and when I turn around Jack is getting himself up to standing in the walker. He placed his left hand and made a totally fair attempt at putting his right hand on the walker too. Then he took a step with it.

HE USED HIS WALKER TOTALLY, COMPLETELY, UTTERLY INDEPENDENTLY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I called Jason right away and he was so proud!

Anyway, Jack's doing it like an old pro now.

Oh, and to make it even more amazing is he didn't have his braces on (today was an inservice day and we made it a jammies day).

Again, I'll try to get it on video asap!

It's really amazing!!! He's really getting there!

Clips of Jack...

I wanted to share some video of Jack moving -- this may be of interest to other parents of children with spastic cp...

Nothing extraordinary but you can see how he has learned to compensate and use his high tone in his favor. You can also see the weakness in his hips by the way he brings his knees together when he's reaching forward with his back against the couch. I sometimes picture this could be the way he takes his first steps...



In this one he's trying to get up to sit in the rocker. He's been successful several times I just can't seem to catch it on film! This was a huge milestone moment at our house! I'll be sure to share the footage when I get it!



Please feel free to ask any questions!

Virginia Tech

I am saddened over what has transpired today at Virginia Tech. The worst shooting spree in US history -- It is horrible and shocking. I pray all of your children are safe and unharmed tonight.

Yahoo News Story

Zoom, Zoom!

We purchased a new car this weekend!

We traded in our Dodge Caravan for the Mazda5...

I Looooooooooooooove it!!! It's not quite a minivan -- and I saw Consumer Reports refer to it as a "microvan" and it's the best way to describe it. It's got more pickup and drives really nice! The inside is smaller, more like a car but the third row of seats folds easily and gives us the same amount of cargo room we had with the Dodge. The rear doors slide open like a minivan too!

Anyway, just wanted to share the great news! Oh, and when we brought it home we took Jack for a ride and he was so happy...he laughed like he was on an amusement ride! Zoom, zoom!

Mazda's website

I Went to Preschool!

Yesterday I spent the entire afternoon at school with Jack. There was a mix-up and the nursing agency didn't send anyone -- so per our agreement I stayed and kept an eye on Jack for seizure activity (which there was none).

I am actually glad I got to do this. I have spent a lot of time observing the classroom but haven't had the chance lately. Jack simply shined...so much more than I ever imagined. He didn't seem to mind my being there at all. I thought he'd head straight for me once he saw I was staying -- but he didn't. He looked over at me every so often and flashed me big smile but other than that he went about his usual day.

First they danced the chicken dance and then the hokey pokey. Jack spun around in his wheelchair and I had to hide my giggles because he was so into it! Jack's little friend M helped push his wheelchair around in a circle for follow the leader...they were under the watchful supervision of the PT :)

Then Jack sat in a little wooden seat for story time. They read a story about a monster under the bed that turns out to be a little brother instead! The kids were so cute. Jack had some trouble paying attention for the whole story but looked at the pictures and pointed to the eyes under the bed when asked.

He was sitting next to his best friend L. Little L is the cutest little girl! They have a special bond that the teachers have mentioned before, but I saw it for myself yesterday. Jack and L both have CP, L can walk but isn't totally verbal (has one word utterances just like Jack). She sticks close to Jack and Jack follows her everywhere.

Then it was time for free-play. Jack used his walker (VERY well I might add with NO HELP except getting up into it) to go over to the blocks area. He played with blocks, little people, trains, and then scooted over to the kitchen area to play house with little L. Jack made whooshing sounds and pretended to wash dishes...little L was helping to dress the Cabbage Patch kid. The PT was working with Jack during this time to encourage Jack to use both hands during play. She also stretched his legs.

Then it was story time again. Jack sat in a Bumbo seat next to little L. They read the Very Hungry Caterpillar. Miss L., the teacher showed the class the caterpillars in the jar that the mailman delivered -- they were eating some sticky stuff on the bottom of the jars. They talked about what the Caterpillar in the story ate and how BIG he got and how he turned into a chrysalis and eventually a big beautiful butterfly.

Then it was potty break time for Jack. Jack walked to the potty with his walker while Miss M. the aid helped him with his pants and diaper and helped him sit on the potty. Jack didn't go but knew the drill. Miss M. diapered Jack and then he flushed and walked over to the sink to wash his hands.

Then came snack time...Jack chose animal crackers and milk and politely asked for "More" and waited his turn. He knew to put his dirty dishes in the bin and to wait for everyone to finish. The speech therapist worked with Jack during snack time. Jack cooperated very well!

After snack Jack used the star cart to go outside. He immediately asked me for the swing, so Miss L. and I took him over to the swing. He loved every minute. It started to drizzle a little so we went inside and it was time for the goodbye song! The PT helped Jack to stand with just one finger assistance (sometimes holding his right hand) and sometimes just putting a finger on his right shoulder. They sang and then the kids got called one by one so they could leave

I'll tell you I was tired and a bit over stimulated after my afternoon at preschool! I don't give Jack enough credit and now understand why he's tired and hungry after school. It's a lot of work!

Well, speaking of school we're going to be late if I don't get him up from his nap!!!

PS -- I am still working on uploading pictures to our new albums!

http://jacksmom.myphotoalbum.com

The First Six Months...

A friend of mine showed me this video and I feel compelled to share it with all of you. It's beautiful and heart-wrenching...it goes to show we arrive at special needs parenting in so many different ways.

It also reminds us how devastating RSV can be and not only for premature babies.

The video made me cry.

Triplets, the first 6 months

We've Decided...

On a name for the Bean!!!

Morgan Leigh

We decided last night while getting Jack ready for bed. Today I asked Jack if he could say Morgan, and he came up with "Mo" for now...we'll practice a little before her arrival in 46 days!! He was able to say "Si Si" for sissy which sounds amazingly cute!

Jason and I have always been fond of the name Morgan. I suggested Leigh which is after her Daddy's middle name Lee. It fits and we're happy to have finally decided!

This weekend the crib is going in!!! I'll be taking pictures I am sure.

March Photos!

I am moving our pictures to a new site! I am starting with March and working my way backwards...

Let me know what you think!

http://jacksmom.myphotoalbum.com

All better...

After resting quite a bit and lots of snuggles Jack is feeling better. I really hope this is it for a while! Thank you all for your comments and well wishes!

UGH!

Jack woke up Saturday morning with a high fever and vomiting -- this is after he's been FINE for several days after being dxed with an ear infection. As soon as he started his meds for that he was totally back to normal -- had an awesome week at school and BAM, hit AGAIN on Saturday.

His fever was 100-102.5 on and off through the night and so far today it seems to be responding to Motrin/Tylenol. He also hasn't vomited since Saturday. He was coughing early this morning -- so maybe he's got something viral on top of the infection.

DH and I were paralyzed with fear -- we thought he would have another seizure for sure and yet he didn't (thank GOD). It was a very low key day yesterday and today for that matter. One of us has kept an eye on Jack the whole time.

I am not sending him to school tomorrow and I plan on calling the ped to get her thoughts. I don't think she'll see him quite yet, but who knows. Please keep your fingers crossed he can get through this illness without seizures.

He used to be such a healthy kiddo! 2007 has NOT been his year...

Thanksgiving 2006 -- Ear infection

Christmas 2006 -- Ear infection

First week in January 2007 -- MRI shows deep ear infection

Second week in January 2007 -- Apnea/Brady during sedation/Botox

Last week in January 2007 -- High fever, vomiting, grand mal seizure, pneumonia -- 911/ER trip

Second week in February 2007 -- Low grade fevers, kidney infection, admitted for several days of antibiotic treatment/tests

Mid March 2007 -- Fever, vomiting, grand mal seizure

Last week of March 2007-- Ear and throat infection

Last weekend of March -- Fever, vomiting possible cold/viral illness

Let's hope Spring and Summer are kinder to him. I can't believe he's been so healthy in spite of being a 25 weeker and now at 4 years old he comes down with EVERYTHING under the sun. I can't fully blame it on school either because he was fine last year?

Anyway, just wanted to vent a little. I'll keep you posted.

Happy Jack!!!!

Jack had his 4 year check up on Tuesday -- not much to report...he's 31 lbs and somewhere around 38 - 40 inches long....he just would not straighten his leg for anything! He's growing, at that's the important thing! There wasn't much else to the visit. He did get 3 shots and needs to go back in 6 months for second dose of one of the vaccines. It was funny -- Dr. C said to just bring him along to the baby's 4 month check up. Boy did that sound strange! At first I was thinking "What baby??" Ha ha!! Sadly Jack did end up getting our bug -- he has an ear infection and sore throat. She gave us an Rx for Augmentin. Jack had been cranky over the weekend but he's like a new kiddo now -- I haven't seen him so happy in almost two weeks.

Jack now has a nurse at school -- though she won't be our permanent nurse, she's just filling in until the agency gets someone on the schedule. It's sad because we really, really like her! Hopefully we'll like the next one just as well. I think it was really the right decision to make. I am relieved that someone's there just in case. Plus she takes all of these nifty notes and I know exactly what went on during Jack's day play by play! She wrote down what he ate, what they did in PT, which words he used, his mood, and a few other goodies! We do get progress reports from time to time, but it's usually much less detail -- so I'm liking this. It is nice to know that we can use nursing if need be after my c-section -- but I feel a little strange about having a "stranger" in my house. If anyone has used nursing at home, I would love to hear about it. Thankfully we do have a lot of family and friends so maybe we won't even need to use nursing! (ATTENTION FAMILY AND FRIENDS -- MAKE NO PLANS MAY 22 until JUNE 22! Hint, hint!!)

We also decided to take Jack's wheelchair to school for the first time too -- now that there's someone to help do the lifting! He loves it...he looks wonderful and all of the kids were excited to see his new wheels. We decorated the back with his name in fancy letters and the PT put red and blue tape on the pegs for his right hand. We were originally waiting for a lift-bus to become available but since we canceled transportation it's not an issue any more. The nurse takes the wheelchair out of the back of our van and gets Jack from the car and does the same when it's time to go home too. I walk them into the building and say my goodbyes.

I am still really sick. It started Thursday with a sore throat and by yesterday it had gone to my chest and I was having a hard time getting a good breath...feels very much like an elephant is sitting on my chest. The family doc said it's an upper respiratory infection and gave me an Rx for antibiotics and instructions to take Musinex (1200 mg extended release) and that's about all he could do. I am miserable. I already lack lung capacity due to a very big bean who likes to keep her feet under my ribcage (okay, so I don't know this for sure but that's EXACTLY what it feels like) then with the tightness, irritation and congestion forget it, I can't sit, or sleep very well at all. I can get my best breaths standing up. I alarmed Jason this morning because I was wondering the hallway at 4 am...I didn't go back to bed until 6 and Jack was up shortly after.

30 Weeks and 1 day today. It's amazing -- the time is simply flying by. After I dropped Jack at school I went to Taco Bell for lunch (fast food is rare for me -- I'll blame the Bean...hee hee). I saw Jack's old bus driver and she asked me if I was ready to "pop this kid out yet?" I keep forgetting just how pregnant I look. I am not used to it -- I get questions everywhere I go! It's amazing to think I missed FIFTEEN WEEKS of my pregnancy with Jack. So no, I am not ready to "pop" yet -- but I am getting used to the idea that May is really around the corner!!!

A Little Update...

Jack's doing well -- here he's going fishin' in his closet!


The scheduler from the nursing agency came by this afternoon -- very nice woman! Our nurse will meet us at school tomorrow! I had no idea it would start so quickly. She wrote a care plan that includes administering meds if needed.

We also discussed some nursing care for Jack after my c-section due to lifting restrictions. I think it may be a good idea.

Jack has his 4 year check up tomorrow! Does anyone know, do they get shots at 4 years old? I'd like to prepare Jack if I have to.

I had a check up with maternal fetal medicine and all looks great! I am 29 weeks, 5 days. Bean's heart was up to 155 bpm -- sounded good! I have a fetal growth scan scheduled for 32 weeks.

Jason and I both have had sore throats since Thursday -- this morning I had some congestion too. Let's hope Jack DOES NOT GET THIS BUG!!!

The neurologist was happy with Jack's levels of Tegretol. He's not going to change anything at this time. We will follow up with more blood work in a few weeks. I am still trying to process all of this.

I hope to post more soon -- and hopefully I'll be able to put my thoughts together a bit more fluidly! : )