Ilse Joy was nine months old on February 4, and she continues to be a major source of joy in our home. Joey and Chris try their hardest to make her smile-- even though they don't need to try at all since she sees them and breaks out in a grin-- and I tell them all the time that she will know for sure that they love her. They are wonderful big brothers to our Ilse Joy.
Ilse is 27 1/2 inches long now, but as of February 8th, she was only 12 lbs. 5.5 oz., which is only 1lb 1oz heavier than she was at six months. We are pretty concerned about her weight, since in the last few days she has dropped a whole pound. She has been sick off and on for two months, really since mid December. We have had one ER visit, another ER visit that resulted in a night in the hospital, another ER visit to replace her button when it came out in the night, a surgery to insert ear tubes because of ear infections that wouldn't go away even after three different antibiotics, an antibiotic that made her scream for several nights in a row, four different bouts of diarrhea-- the first lasting for 23 days, and the latest for one day, two nights, and part of another day. This latest bout made her lose the pound I mentioned earlier.
Next week we will be beginning some deep testing on her immune system. They are going to see if her body has reacted properly to her vaccinations, do a complete metabolic panel which includes liver function, and check something having to do with protein albumin, or something like that. The reason the doctors want to do this testing is because the last immune system testing just raised more questions as some of the numbers were high and some were low.
We did have Ilse tested for allergies to milk, soy, wheat, and egg. Of course we knew she is allergic to egg, and I was honestly hoping she would be allergic to milk since that would explain the random diarrhea and barfing, but no such luck. We will have to look deeper. Of course some of her barfing is because of SLOS, but I don't think all of it is.
Ilse has really started playing. She grabs for toys without fail these days, and she brings things to her mouth also. Her fingers are her favorite toy, though. The other night when she should have been sleeping, she was instead holding one finger in her mouth, her other hand on that hand, and talking. It was super cute and kept me awake quite effectively. I bought her the Fisher-Price Jumperoo, and she loves it! She doesn't quite jump correctly. She more break dances.....
I love watching her play. I am working on fattening her up, but it is a constant struggle to get enough food in her. The last two days she has only barfed once a day. That has been nice. Also the last two nights I have gotten up in the night to feed her. I intended to get up twice each night so that she would be eating every three hours all day and night, but this tired mommy just can't do it. In fact, I wouldn't even have gotten up the first night I fed her in the night except I dropped my phone on the floor in the dark, before I got the alarm turned off. That right there got me out of bed which in turn got me to her room to feed her. I just couldn't do that twice in one night, though, so I didn't even try to get up again. Then last night the only reason I fed her in the night was because I just stayed up for it. Yes, that's right. I stayed up till 2:15am just to feed her again. I don't know what is wrong with me. I guess I am doing what I must to ensure that she gets fed in the night even though it makes me Mrs. Zombie. I generally get a little nap sometime during the day. The boys are really good at having "quiet reading time." they really do lay on their floor absolutely quietly and look at books, sometimes for two plus hours. They are amazing. I don't now now I would get through the night without that little snooze, and yes, I did just call two plus hours a little snooze... Lol.
Today Ilse actually ate in therapy! I fed her squash on my finger, and she gobbled it up. I need to do it again tomorrow before she forgets how to take food off a finger. Our therapist was amazed. Ilse is also doing really well putting weight on her legs and her right arm. I have ordered her some elbow immobilizing splints that my friend Micia found. It is too bad they aren't pink, but they will hopefully do the trick of getting her elbows locked so I can help her be int he crawling position without feeling like I am an octopus holding two legs, two arms, and a tummy. I guess that would be a quintopus, but I am not one of those either, whatever it is. Something with five appendages.... Um, yeah. :)
Tonight at Walmart I bought the boys camo bandanas and sleeping bags. They will have so much fun I think.
I have been doing really, really well making food at home. We are saving so much money it is unbelievable. We just got our Sam's bill, which before was in the $800-900 range, but this time was ZERO. Yes. So nice. With the diarrhea bout I did go to Starbucks more than I should have, but since I was dead on my feet from not being able to leave the changing table during the night I think I can forgive myself.
And then today we went to Starbucks to celebrate getting our tax return. :) I can't think of a better reason to go spend $14.
Life around here is busy but wonderful. The Lord sustains us, blesses us, and gives us much joy.