Angeline is very picky about what she eats. She LOVES avocado and she especially loves it with a bit of salsa and garlic, my guac. baby. It's even better when its in a bowl with a spoon and she gets to feed herself. What a beauty even with the green stuff all over her.I have a praise/blessing to share from last week... I had tried to get Angeline on our insurance. I read a lot about our insurance and I felt that she did qualify even though initially they denied her, I went back and tried again. Since Angeline is a child placed with us for the purpose of adoption, she qualifies! Or at least I hoped that she would qualify... and this week an insurance card came in the mail for her. So the past two days that we spent at Children's hospital getting all her "parts" checked on, we were able to present them with an official source of payment! WHOOHOOOO!!!!
Good things come to those who wait and those who are persistent. :)

The appointments went well. Leishan and Lulu came with Bean and I to Seattle for the two days. It was nice that we had some family to keep us company. Angeline is so patient with everyone bugging her, she just did wonderfully. First we had PT. The PT did yet another assessment on her development. (This was the 3rd one since July and is the 3rd different kind of assessment that has been done.) I realized that since they are using different tools to do developmental assessments and since they are allowing different people to administer them each time, that can't be very valid or reliable! So I took the results and didn't get too worried about them right now. We are really pleased with the amount of "things" that she can do. And she is developing and growing, that is what matters to us, not what equivalent "age" she is at. Angeline will be 1 on February 1st, so she should be at a 12 month level.
For physical development she is currently at a 6 month age level.
And for "all other areas" she is at a 7 month age level.
(I am not sure why they would group the rest of the developmental areas all together. Socially I think she is far superior of a 12 month old. Her communicate whilst not always verbal, is excellent and she has typical fine motor skills... but whatever, we hope that next time they at least use the same "tool" to evaluate her.)
The good news is that she DOES qualify for the developmental delay program and I will be calling them to get her in ASAP now that she has insurance.
We then met with the developmental doc and nurse. Angeline's weight is currently 16 lbs. Her height, weight, and head size have gone a bit down off the "curve" that they were on, but the doc said not to get worried about that either. We will keep an eye on things. I just adore this doctor, he sits and lets me ask a million questions and never makes me feel rushed. He is such a blessing.
After feeling Angeline's head he was a bit concerned about her skull sutures and her fontanel. So being the on the ball kind of doctor that he is, he called over his friend from craniofacial and she took a "feel" of Angeline's head. (I was having flashbacks of phrenology lessons from Psych 101.) She said that although Bean's head isn't the typical "skull" of most babies, he is the way that her skull adapted to the hydrocephalus that she had for quite some time. So she has a bone in the center of her head that seems to be thickening and this will hopefully eventually come up enough to that she won't appear to have a flat or sunken area in the front of her head. It's certainly not an issue because she has the most beautiful curly hair that covers it up very nicely.
We then met with the dietitian who is happy to hear that Angeline is on regular formula not the special pre-digested formula. She is also off her meds for reflux and is doing fantastic with her bottle eating! Angeline still hates all kinds of baby foods. I think she just has really dull taste buds and likes things with more flavor. Plus she wants to be an independent feeder so we are just working on her chewing and swallowing. (Still no teeth!) We will start to transition Angeline over to milk in the next couple months and we went over a list of really great starter finger foods that will give Bean a couple more options with her diet.
That was the first day. On the 2nd day we had a VCSG (I think!) test that was an xray of her bladder/kidneys and then they catheterize her and fill her bladder with dye... they continue taking xrays and watch how her bladder empties and they look for any reflux of her tubes into her kidneys. This whole event was fairly traumatic for Angeline. She apparently has a really small and hard to find urethra so it took several tries until they finally called down a urology fellow to do the cath. This was the first time that anyone ever successfully put a cath in Bean. She was really good but the whole time I was breaking into a panic sweat because if the professionals were having this much trouble, how was I going to be able to start doing intermittent cathing if she had urine refluxing into her kidneys?
After the test we went and met with the urologist so that he could go over the results. The good news is that no urine is refluxing into Angeline's kidneys. The bad news is that she has no bladder control at all. Her bladder is functioning very typically of someone with SB at her level. (The L-5 spine level.) Angeline just empties her bladder constantly. This is ok for now. Really it will not affect her socially because this is normal for a baby. But as she gets older it may become a consideration and in order for her to ever be "dry" she will have to have at least one surgery. Then the result will be intermittent cathing in order to control when her bladder empties. The best thing for her bladder and kidneys is just to allow the normal process to go on for now. There becomes a greater risk of infections and illness when you start doing surgeries and cathing etc. but at the same time we know that Angeline may want this independence some day! So we will just wait until she is 8 or so and then revisit the options at that time. Angeline will go back for more testing later in the Spring, where they will measure the pressure levels in her bladder, then from there we just monitor things to be certain that she doesn't start refluxing or getting any kind of UTI or kidney infections.
Our last appointment was for new "boots". Dr. M. was not impressed that I took her casts off earlier than I was supposed to but understood my reasoning as to why I did it. (The snow caused us a missed appointment and his scheduling staff didn't return FOUR phone calls to re-schedule...) Angeline had a blast going swimming with me and taking lots of baths so I don't regret it one bit. BUT... Dr. M. wants to see us TWO more times for casts. So the next two Friday's will be spent in Seattle... then I think they will schedule her foot surgery fairly quickly after the last casts. There does seem to be a bit of regression movement once the casts are off. I am praying that this doesn't fall before I go to Haiti or while I am there. I need to be here with her for the surgery, its a big deal. I will ask more questions at next week's appointment and see what the big plan is.
"Sam" who is the tech that puts the casts on while Dr. M holds her ankles in place said that children often like to eat the casting material. Thanks for letting me know after the fact Sam. (We have really enjoyed Sam over these past few months. He is always SMILING!)
Ok well off to clean, home school and exercise! Thanks for the continued prayers. Angeline is still my greatest blessing. :) :) :)
Sarah



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