This post was written on Wyatt's birthday and I just discovered it in the drafts on March 31st.
Wyatt is four! It is his very first birthday that he is walking with out assistance, so we are having a birthday month! I reflect on how things are different than Wyatt's first year of life and how some of them are still the same. I would never call us normal, but we have a "new normal" that we are happy with! I remember praying daily while Wyatt was his sickest in the hospital. I prayed for him to be happy on Earth with us. Miracles do happen and I have a very happy, energetic, full of personality kid! I am so happy of all his accomplishments so far. It's his personality that got him through the most depressing times. He has experienced so much stress and handled more in his four years of life than some adults do! It is my mission now to limit the stress in his life and let him enjoy being a four year old little boy! Here are some updates:
Wyatt is still on oxygen while he sleeps. He is on 1/4th to 3/4ths at night, napping, and in the car. We have had two sleep studies and I have even tried to turn off the oxygen while he is sleeping (while hooked up on the pulse ox) and he still destats while sleeping, so he continues to remain on oxygen.
Wyatt still has his feeding tube and gets fed all night long 75ml/hr and four bolus' during the day time.
He still sleeps in our "dining/playroom"
We still have nursing to monitor his progress while I work and while we sleep.
Wyatt still has PT
Now on to the things that are different!
Wyatt is now walking, running, and jumping! It is not a normal walk, but he is progressing. We are working on his endurance, so far we can walk the length of the driveway and then wants to be carried!
Wyatt is experimenting with food and showing interest in all kinds of food. He is not consistent, but he will try to swallow more food. I recently made an appointment at the feeding clinic at Mt. Washington and the next available is in April.
Wyatt is above average in speech and is doing great in school. He is cognatively meeting his developmental milestones. He can write his name, identify letters and numbers, carries full conservations with adults, plays music (guitar and drums), sings, loves books, etc...
He is potty trained! At least during the day, I don't expect anything at night since he is fed all night long.
Things we are working on:
Socializing more. Wyatt enjoys to "hang out" with adults more so than kids his age. He can carry a full conversation with a grown up, but is shy around kids. Because his physical limitations, he can't keep up with kids on the playground, on a field, etc...Also Chloe has many friends that come over to play, but Wyatt does not. Thank goodness for preschool and having a sister 14 months apart, we are working on this.
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