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 schedule...it 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 far....it 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....

Wednesday, October 7, 2009

Another surgery!


Sad Summer...cute pouty lip :)


This is the cutest cross-eyed baby ever! She gets excited or sleepy and her eyes roll around in her head...so funny. But, not so funny. We went to an Opthomology check up yesterday and her eyes are not improving with the patching we are doing, so they want to correct them surgically. We have been watching her vision for the past few months and it has been fine so far. However, the right eye, which is the one that crosses in the most, is not as strong as the left. In order to keep her eyes progressing with good vision, the issue needs to be repaired. Generally the doc tries to avoid surgery with glasses and patching, but in Summer's case, she doesn't need corrective lenses, so the glasses wouldn't help.

So, back to the OR we go! They will make a couple of stitches to tack the muscle down and straighten out the eyes...it is a day surgery procedure, but still requires anesthesia....sigh. The surgery will be in the next month or so...I am just waiting for a scheduler to call me.

Can we ever have too many pictures? I think not! ;)

Happy baby...

Monday, October 5, 2009

My hungry little caterpillar

Saturday night we took the kids out to dinner and to the bookstore...Tom and Andrew both had gift cards from last Christmas they hadn't spent, so it was about time we used them :)

Little Tom chose a "Calvin and Hobbes" Treasury, Andrew picked 2 "Pokemon" chapter comic books, Morgan picked out a "My Little Pony" puzzle book and Summer picked out this, "The Very Hungry Caterpillar" stuffed toy. While we were looking around, I handed it to her...I thought it was cute...and she got very attached to it right away. When we were about to leave, my hubby took it from her...she obviously didn't want us to take it, so we gave it back. He tried it once more and she wrenched her neck around looking for it, whined, and jabbered some lecture toned sound....she squeeled and had a huge smile on her face when he handed it back to her....so, of course we caved, and bought it for her :)

That night at home, Summer was playing with the caterpillar...I took off the now very soggy tag and read it. Without knowing it, we chose a toy that was a very appropriate symbol for our little girl....


Eric Carle's, "The Very Hungry Caterpillar" is celebrating the 40th anniversary of the book, so the author wrote a special note for the tag...it reads:

A message from Eric Carle:
"The Very Hungry Caterpillar"
is about hope. You, like the
little caterpillar, will grow up,
unfold your wings and fly off
into the future.
This little caterpillar of ours has certainly beat a lot of odds...she is on her way to becoming a butterfly :)
....and, to boot, she has matching PJ's :)

Friday, October 2, 2009

Summer has something to say...

Babies have the best expressions....Summer was kind enough to give us a little sample of almost all of hers in one video clip! So cute!

video

Progress at the moment:

Summer has successfully handled the formula increase so far :) Last week I discovered another tooth...on top in the front...when she bit my finger, ouch :) Next Tues. we go in for an eye check-up...(her right eye is still having muscle control issues)....then the following Tues. is GI clinic and a check up with the Neurodevelopment clinic. Life if busy for her, as usual, and she is just as happy as ever!

Can I dial with my nose??


Little feet...getting bigger!