Sunday, June 26, 2011

3 month update

Father's Day nap
Hello all! Sorry it has been so long but you know how it goes; life happens.  I just put Tyler down for a nap and Brian is taking Peyton back from our visit so I am ignoring the dishes in the sink and sitting down with a cup of coffee to finally give an update.  It has been a busy week as we have had Peyton since last Saturday which makes never a dull moment!  He has become quite the daredevil and I thank the Lord at the end of each visit when he goes back to his mom without any new bruise, bump, or trip to the ER!   I can't believe he is about to start kindergarten.  It has always seemed so far away but now it's here. We will get him one more time for two weeks before school starts and we will have to start doing the every other weekend deal.  This will be an adjustment because we have gotten him for 9 consecutive days a month for some time now. We got to spend some good time together this week which included numerous games of Candyland, bike rides, and the Wii.  My mom even watched Tyler so Peyton and I were able to take some time in at the pool with family which was nice.  Brian's parents came down for a visit and they couldnt believe how much bigger Tyler is.  He is up to a whopping 8lbs 11 ounces.  He is out of his preemie clothes and into the newborns..woohoo!  I gave Pat (Brian's mom) some of my favorite preemie outfits and she is going to make a little blanket for Tyler with them. 

Playing candyland before bed; Tyler was not impressed.
Tyler finally got his swallow study done Monday.  Since birth, feeding has been rather inconsistent.  Sometimes(usually at night when he is really sleepy) he feeds smooth and easy.  Many of the times, it's like he thinks too much and breathing, sucking, and swallowing becomes crazy.  He was choking at least once per feeding and Brian and I have been pushing the issue of a swallow study for some time.  Finally, after some exaggeration and a tiny bit of manipulation on my part one was ordered.  This past Monday, we went to the hospital and they put barium in his bottle.  He was placed behind some sort of x-ray machine that showed a constant picture of his throat, mouth, etc.  He started feeding and pretty quickly the feeding therapist told me to stop.  He was aspirating and the milk was going into his lungs.  The feeding specialist told me that he has probably had treated pneumonia this whole time. Since he has been on amoxicillin for his kidneys, it had kept the infection at bay.  I felt sick to my stomach that this had been going on for so long.  This taught me several things.  1) Trust my insticts. Just because I don't have a medical degree doesn't mean I don't know when something isn't right with my child.  2) Be persistent and insistent when dealing with medical personnel.  We were able switch positions to what they call a "elevated sideline" to feed and ensure that none is going into his lungs. This position requires him to be completely on his side and slightly elevated.  Hopefully, as he matures and increases muscle tone this is something that will correct itself.  It could pose some issues in the future if it doesn't so we are crossing our fingers.
First Steps did their evaluation and we have put together our "plan of action" for the next three months.  This included a list of goals we wanted for Ty and then how we were going to accomplish them.  The team they have assembled to aid us in this will look like this:
Physical therapy- 1x a week for 45 minutes
Occupational therapy- 1x a week for 45 minutes
Speech therapy- 2x a month for an hour
Developmental therapy- 2x a month for an hour
Audiologist visit- 1x a month for 90 minutes
The process for getting his hearing aids is done and he will get his magic ears July 5th.  FINALLY!

Tyler is doing great.  He is doing more talking, smiling, and developing quite the flirt personality :)  We are excited to get the therapies started and see him grow and progress in his development. 
Love to you all!

Sunday, June 5, 2011

Everything's Gonna Be Alright

When reading about WH, it said that some children don't make eye contact or smile.    Some children never talk.  I am trying to take what I read with a grain of salt but it is sometimes difficult and depresssing.  This week, Tyler has taught me that he is not WH.  He is not to be labeled.  He doesnt have boundaries and he is AWESOME!!!! While doing tummy time, he rolled over to his back.  I couldn't believe it and thought maybe it was a fluke.  Since then, he has shown off his new trick to Brian and my dad on two separate occasions.  He has also started making eye contact and smiling AND "talking".  This all prettty much happened on the same day. The whole talking thing is also impressive considering he still doesn't have his hearing aids. I couldnt help but allow the tears of joy to fall as I fed him his bottle after all this occurred.  I looked down at my perfect son and realized it will all be okay.

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