After attending Jordan World Circus, thanks to the Starlight Children's Foundation, @ the Puyallup Fairgrounds...Summer LOVED the ponies, elephants, and especially the high flying acrobatic Ariel princesses (her favorite...she kept saying "printhess, ahh, ahh, ahh (like Ariel's singing) 3-12-2011

Sunday, October 18, 2009

Recent news on the medical front...

This last Tues. was Summer's GI clinic visit (now every 4 weeks), and a check up with the neurodevelopment clinic.

First we went to neuro...the nurse practitioner we usually see is no longer with the team, so we saw someone new...she was very thorough. She told me after reading the notes from the previous nurse, she expected to see a baby who was much worse off developmentally, than Summer is. She explained that the notes indicated a concern for Summer's progress being so delayed....this perplexed me a bit. I had been told each time we went in that she was doing fine and they weren't concerned with her progress as long as she was moving forward. The new nurse said she was only at about a 3-4 month level, in her motor skills, in July (when she was one). Now, she has made so much progress (about 5 months worth in 3 months), that she is about a 8-9 month old developmentally. We discussed options to try and maximize her potential...we are going to have her evaluated with an occupational/physical therapist again at Children's to make sure there isn't anything we are not doing for her to progress better. We also talked about her ability to eat solids...this is a struggle for me with 3 other kids and a busy is hard to remember to feed a baby that isn't hungry. We are going to see a feeding therapist to help with this :) It will be exciting to be able to get her take things by mouth better than she does...we'll see what happens.

The nurse also thinks getting an MRI of Summer's brain is a good idea. She isn't overly concerned about it, but feels it is good timing at the moment. Summer is scheduled for her eye surgery on Nov. 9th and will be sedated...the MRI requires this, so they want to take advantage of the timing. Summer has had a couple of Cat scans, one which showed many areas of concern, then a follow up that showed large areas of improvement...the MRI will give us a better "picture" of what may be going on. She feels that maybe there is some scar tissue on the part of the brain that controls motor function....sigh.... There is no way to tell what outcome we will have....we just have to wait and see how she does. She said it could mean something small, or big...maybe a slight learning disability, or maybe she won't be the most coordinated child. So, we will get the MRI and go from there....

Socially and mentally, as far as we can tell, Summer is doing great! Her language is developing nicely and she has shown definite preferences with mom/dad, brothers, and toys. She also exhibits jealousy sometimes when Morgan climbs up on my hubby's lap :) These are all good signs in this department :)

Our next appt. was with GI. Summer has made HUGE progress here! Ever since she had her broviac replaced (about 7 weeks ago) her bum has been clear! This, though it may sound trivial or odd, is no small feat. Since Summer has such loose stools, her bum is in an almost constant state of rash....bumpy, bleeding, painful...not anymore! The nutritionist couldn't believe it was the same bum :) Bum transplant! I often think it is hilarious when we are in a room with 4 grown people discussing how cute or clear my baby's bum is...anyone who is part of the GI world understands...that is what life revolves around!

Summer's lab work still looks fantastic! Her liver function is excellent and all other body chemistry they follow, is looking good :) I had increased her formula, in her NG, by 10 ML's during the last 4 weeks and Summer did great....she gained 12 ounces, making her now 20 lbs. 4 oz....and grew 3 CM! This, of course, was good news too :) We got to turn up her formula another 5 ML's...she is now at 75 ML's per hour...her new goal to be free of TPN is 95 ML's per hour :) getting closer! Even better news......THEY DROPPED 2 DAYS A WEEK OFF THE TPN/IV SCHEDULE! This is the best news so is getting us closer to getting rid of her dependence on the supplemental nutrition....and taking out the IV! WOOHOO! I was not expecting this change, so to say I was thrilled, would be an understatement :)

We have another appt. in 4 weeks...the day after her eye surgery and MRI, on Nov. 10. For the next couple of weeks, we will hope for good growth, a clear bum, and tolerance of the lack of TPN those two days....

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