Wednesday, May 23

An update on B

Little man is now becoming a big boy and in 3 months will be TWO. That blows my mind.

*We have been slowly weening Brayden off his Phenobarbital (seizure med) for the past 3 months. Last night was his last dose and we had zero problems with the ween. He had been on it since 7 days old and we were worried the ween would bring on seizures, which is common. (fingers crossed) It went perfectly and now he is just on one med for seizures, which hopefully someday he will be on none but we are happy for now.

*Yesterday I med with B's special needs Dr and an equipment vender to talk about stroller/wheelchair options for B since he has outgrown his stroller and with his low head control he needs a special chair. We found a great option that insurance covers!! It looks like a stroller. Folds down like a stroller. It's light weight. It will grow with him. It is approved for van/bus travel when he goes to school at 3.

It's called a Kid Kart Express. It will be here in a few weeks.




*B is rolling like crazy, especially with his new play gym that D made. He loves it!

*B got fitted for night time leg braces (AFO's) and so far hates them. We are trying to get him to nap in them to build up to wearing them all night.

*B is starting to make small little laugh noises when we tickle him. Maybe we can get a laugh soon!

*We have been thinking about getting B a G tube, permanent feeding tube that would be surgically inserted into his stomach. He has not been eating well and his weight has been up and down. We are meeting with his GI Dr again in July to discuss more. The other night it was a struggle to get B to take his meds, which with a tube he could easily get.

*Tooth number two is right under the gums and any day now!

Sleeping in this morning

Being silly with mom!

Dad likes the play mat too!

14 comments:

californiadreamin said...

He is so darn cute Heather!

Kristen at First Name Smith said...

that sweet little man just has me in all smiles. I love him!

Taylor said...

I've never commented before, but have read your blog for a long time. Turns out it was a good thing I did, as I learned so much from you and Brayden...I ended up having a preemie with a wicked case of hydrocephalus. Thanks to having read about your experiences, I wasn't totally clueless when they started talking about shunts and EVD's and the like. This is all to say that my son got a g-tube in February, and it has been one of the best decisions we could have made for him! I am thankful for it four times a day, and all through the night :) The surgery was very quick and easy, as was the recovery. I was nervous about actually doing all the g-tube stuff on my own at home, but going back to the NG experience of the NICU, it really wasn't that different, so you really kind of already know what you're doing, you're just hooking a tube up to a different spot! Please feel free to contact me if I can answer any g-tube questions for you!

Caroline said...

Such a sweet, loved little boy. I'm so happy that you've found a stroller that will help. It sounds like everything is moving in the right direction for B!

Jen said...

THat stroller looks AWESOME Heather!! That is also great that insurance is covering it. Looks perfect for the zoo. I can't wait for us to pick a date so I can meet your sweat little man :-)

Nantucket Daffodil said...

I read every post you write Heather...and you constantly tug at my heartstrings. You and your husband are amazing people. B is the cutest, and I think as readers we get SO excited to see him accomplishing milestones. My 8 year load daughter and I cheer for this little man we have been following from before he was born...before you two were even married.

I hope your celiac diet is going ok. My daughter does well for the most part, but misses some things terribly. I have been pinning recipes on interest, and the cheese crust pizza is AMAZING! I've also made a regular blueberry coffee cake , substituting Pamela's...it was amazing.

Love the new stroller..and your daily journal of your sweetie.

Anonymous said...

I must say I read your post always and as a mother, and a pedi nurse you are amazing. great job I can only imagine how hard your days must be. Brayden was blessed to get you as his mom, you take such amazing care of him. Amazing!! love looking at his smile

Poella Divine said...

B is so so lucky to have two loving and caring parents. That picture of him smiling with you is just precious. You are one blessed mama. :)

Katie said...

Such a happy boy!! Haven't commented in a looong time, but have been keeping up :) Your family is an inspiration, Heather! That stroller looks awesome!

Lauren said...

Hi Heather!

I have a 3.5 yr old son with moderate/severe CP from a birth injury. That aside, he is perfect :) We fought the tube for 2 yrs and finally decided about a year ago that it would take SO MUCH stress off of us. He is on three seizure meds and doesn't always feel up to eating. We finally got it placed 2 months ago and it has been a miracle for us, and him! Best.Decision.Ever!!! He still eats orally, but we put all liquids through the tube. Good luck to you and I love reading your blog. I just wanna squeeze Brayden! He is so sweet!

Anonymous said...

I am so glad they make lighter weight strollers and equipment nowadays. B looks so happy in the pictures. I have a younger brother who was born 2.5 mths. premature and has CP and is considered legally blind(vision is 20/400). I can remember so many products were so heavy and some my dad would have to modify to suit my brother's needs. My brother graduated high school and college with honors. Wishing you and yours the best in the years to come. Nice to see family so involved.

Kelly said...

I think you guys are just the best parents! B is so lucky that you guys are so on top of things!
ps love all of the teeth pictures!
pps yes I am THIS far behind on reading blogs

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