Long overdue update!!

Wow! Where has the time gone? Has it really been SEVEN months since I've last updated everyone? I guess I have had some good excuses!! Our biggest news - AIDAN IS OFFICIALLY A BIG BROTHER!! Baby Kade Alexander was born on April 14th, 2010! Aidan is absolutely in love with his brother and baby Kade has been so wonderful for him in return. We see Aidan moving more to watch his brother and smiling more often when he hears him or sees him near. Watching my two sons interact together just melts my heart!! I am one PROUD momma!

(In Kade's defense, he is a VERY happy baby, nothing like this picture of him crying! I promise to add a few more pictures soon of both boys!)

Another major change in our lives, we have found a new nurse. Her name is Miss Cathy. She has been such a blessing to our lives! She works hard with Aidan doing stretching, therapy and just being there to give hugs and kisses. We are so grateful to have her in our lives. I know Aidan just adores her!!

Aidan has grown since I've updated last (obviously!). He is now up to:

26lbs 8oz
35" long

Since Aidan got his trach in September he has become much more rigid, so recently we have started him on baclofen, a muscle relaxer. It has really helped loosed Aidan's tightness in his arms and legs and is allowing him to do things again that were physically impossible for him in the past - like putting his fingers to his mouth!! YAY AIDAN!!

Aidan had been relatively healthy this year, in fact his last hospital stay was in January of this year. However, on Wednesday, that all changed. Aidan was at home with his nurse while Kip and I were out for a couple hours and we got a text from her saying, "call me." We got home and realized he was retching, so I vented his g-tube (his way of throwing up) and it was pure blood. So off to the ER we went. After tests and bloodwork galore, we found out Aidan's stomach fundoplacation (or nissen) has come undone.

We were hoping to have surgery on Friday to fix it, but they got extremely swamped with traumas and were pushed back to Monday. Well as of right now (11:45pm on Sunday), we are not on the surgery schedule, but are being told not to worry. They always work in admitted patients. I say I'll believe it when I see it. Why were we pushed to Monday and not Saturday or Sunday you ask? Well the hospital feels that this is not an emergency surgery. And I agree, however, my little man hasn't had anything to eat since he came off his continuous overnight feed at 8:30 Wednesday morning! (The nissen keeps Aidan from throwing up and aspirating anything into his lungs!).

We would really appreciate your prayers as we await surgery for out little man! Aidan just can't seem to get a break, but ALWAYS handles everything that is thrown at him with a smile. He is such an inspiration to me!!

So we're in the hospital (day #2) with our little man, who's 2 week viral infection has turned into pneumonia. He's on IV antibiotics and breathing treatments, so he's starting to feel better. He's just not Aidan yet. VERY tired, yet won't sleep, just stares at the tv and/or toys. Please give a little prayer (or 2 or 4) for my little man that he starts feeling better and we can go home and celebrate Christmas!!

Thankful

I am so thankful for this little boy and his daddy who loves us so!!

Happy Time and Sad Faces

We had a great weekend. Lots of family time and Kip and I actually got the chance to go out by ourselves! I think my exact words to Kip while in the car were, "So when I get to the restaurant, I don't have to get the kid, and all his bags and the stroller?!?!?!?" Now, I do love my baby, more than anything, but I soooooo enjoyed just walking in to a restaurant and having a conversation with my husband.

Kip left today for a training camp in western KY for the week. It was a sad day, full of tears for us all. Aidan cried crocodile tears when Kip picked and said "Bye, Putter. Be a good boy for Momma and I'll see you soon!" He cried for a good half an hour after Kip left too!! And yes, Momma cried too, then the new baby got all upset - no one likes it very much when Kip leaves.

Have a good week, Kip! Aidan, the baby and I can't wait to see you this weekend!!

Amazing!

Aidan had an AMAZING day today! He woke up in a great mood. I let him play a little in his bed before getting up for the day, then we relaxed and watched some Spongebob (of course!). Aidan had a therapy appointment this morning and just blew me away!! He let his OT stretch his foot, arms and hands without so much as a wimper. We worked with his speaking valve for a while. Instead of getting maybe a minute, he let it on for over 6 minutes!! Then we had some tummy time - my boy lifted his head the ENTIRE time!! I was speechless!!

Once Kip got home tonight, I wanted to show off Aidan's new talents. So we played on the floor for a while and again, Aidan was looking up at his toys the entire time!! Then we sat him in his chair and he was so happy watching TV and playing, I had to take his picture. Sorry for the bad quality, I used my phone not the camera.

Aidan Update

We met with Aidan's nutritionist today. Aidan is doing really well with his feeds, so much in fact we were actually able to stop his antacid! He has also regained all of the weight he lost while he was in the hospital. Here are his stats:

22lbs 4oz
33" long

Way to go Aidan!! Still under the growth chart, but gaining steadily on what we like to call "Aidan's curve."

Aidan also had an appointment with the spine doctor last week. Unfortunately, Aidan's curve has gotten worse, he was scanned at 61%. The good news is that it is NOT affecting any of his organs or hindering his breathing. The doctor said that while he will definitely need surgery one day (they normally like to wait until 12 or so for the last growth spurt), we have 3 options. One is to do nothing and watch him. Two is to brace him and watch him. Three is to do surgery. After major discussion, the doctor told us he WOULD do the surgery, however Aidan really doesn't have enough meat on his bones to do well with recovery. And we're just not ready for Aidan to have yet another surgery, so we decided to get a new, bigger back brace and see how it works.

Aidan has been making big progress in the head control area. He now will lift his head while we carry him and look around at his surroundings!! Yay - Aidan!! He has also started back with vital stim therapy to try and improve his swallow. We had an appointment today and he was just loving the whipped cream that we bought for him :) Boy after my own heart!! As for hippatherapy (horse riding), we have decided to wait until spring, hoping to steer clear of cold and flu bugs!

Finally, I'm SOOOOOO happy to report that Aidan has not needed his vent for the last two weeks!! WHOOOOO HOOOOOOOO!!!!! He does use his trach collar, which provides some moist oxygen, at night. But he is 100% breathing on his own - 24 hours a day!! I am so proud of my little man - he never ceases to amaze me!!

Waiting

Aidan and I had an appointment today. We rushed to get there early, hoping we could get seen early and maybe get to run some errands. But, of course, I was wrong. Like all other doctor appts, we sat and waited. Even Aidan's favorite toy was no longer a comfort. But we survived...barely.