Apparently, I am the worst blogger ever! I haven't had a chance to write since Elizabeth's birthday in July - over five months ago! Right after that a friend of a friend knocked on our door, offered to buy our house and wanted us to move out in three weeks. We found a new house in the middle of being built, and then our buyer's money fell through. We decided to put our house on the market and move forward with the new house. Needless to say, the last five months have been spent staging the old house, keeping it neat for showings (an impossibility with three kids!), packing, moving, unpacking and getting settled. The good news is we are in the new house, and it's fabulous! We bought it early enough that we were able to get hardwood floors throughout and widen doors to accommodate a wheelchair for Elizabeth. It is also a one story since our old two story was killing me having to carry E Bug up and down the stairs all day. Plus, the boys have an acre of land and a ton more room in which to play! The new school district is amazing and has a great Early Childhood Intervention (ECI) program where Elizabeth will attend when she turns three. We are truly happy here!
In other news, Elizabug continues to do so well!!! She can now sit independently (as long as someone is nearby to catch her when she falls over), commando crawl backwards and is beginning to push up on all fours. She attends Mothers Day Out once a week and is thriving there. Her teachers are WONDERFUL, the school bought her a special chair to help her sit independently, the other children are super sweet to bring her toys to play with and she is really responding to the program. She is now able to sit in a high chair at restaurants and in the cart at the grocery store. She even went sledding in the snow we got two weeks ago and LOVED it!!! E is also saying a few words: Da (for Daddy) is her favorite, she can also say Dalia, Mamamamama, Ja (for Jack), bad dogs - go go and a few others.
In August, E began to switch from formula to milk. During the transition her little bowels began to become obstructed, so she now gets an enema every night. It sounds so much worse than it is - in fact, I don't think E even feels it. The nightly enema is basically training E's body to expel all her poop every night. In a few years, she will switch to a "magic medicine" where we can perfectly time exactly when she will need to have a bowel movement. That way, she can go about her business during the day and go to the rest room at the same time every night. She won't need to worry about having an accident during the day.
In September E had her one year evaluation with ECI. During this evaluation, all of the different modalities came and tested her to see how she was doing physically, cognitively, etc... E measured right around the 10-12 month range and was not considered delayed in anything except her gross motor skills. They also assessed her to see if she needed intervention from an early childhood specialist, and she did not! They thought she was playing and acting appropriately for her age. Additionally, on the 15-month ASQ that the pediatrician has us complete, E scored in the normal range for most areas, got a 100% in problem solving and got 0% in gross motor. So averaged together, she was totally normal!
In October, she was seen at the Spina Bifida clinic at Scottish Rite. I wasn't exactly thrilled with them at the previous visit. You may recall that they were not all that positive, and I left there feeling very depressed. At her October visit, they finally realized how hard we had been working. In fact, the developmental pediatrician (aka "the spina bifida guru") gave her an A+!!! We also saw a nurse practitioner, physical therapist, occupational therapist, nutritionist, Sue the poo guru and an orthotic specialist. E was wiped out by the end of the day, but since she received such great prognoses, it was well worth it. She was also given her first "wheelchair." It is a stander with large wheels on either side, just like a wheelchair. It is amazing how well she's adapted to it. She wheels around all over the house and loves her new independence!
It is common for children with spina bifida to have eye issues. Whenever E gets tired, she has cross eyes/lazy eyes. So last month we saw the pediatric opthomologist. He believes E can see but that her eyes move/twitch and that she has a half unit of nearsightedness that she will likely outgrow. He saw no reason for her to wear glasses or a patch and did not think surgery was necessary. She returns in April for a follow up visit.
For three months, we worked on switching from the bottle to the sippy cup. And it was a MAJOR challenge. I am happy to report that about two-three weeks ago E finally switched to the sippy cup permanently. (This was only two months after the age at which Parker switched, so I'm feeling pretty good!)
E continues to see a nutritionist every month and a physical therapist and speech therapist every week . Nutrition-wise she is doing okay. She got two ear infections in November and December and as a result lost some weight during that time. She is almost up to 20 pounds now, and we have come up with some new ways to help her get some more calories. Poor kiddo is still in the less than fifth percentile, and she is by far the tiniest in her class. (Since she's so close to 20 pounds, we went ahead and switched her carseat to face forward. She loves it because she can watch movies now.) She is also doing great in physical therapy. E is ultimately able to do everything, it just takes her a little extra time to get there. As for speech, this is the area in which she needs the most help. We aren't really working on "speech;" we are actually working on eating/swallowing. E still has issues with solid foods so she is only able to eat baby food, pudding and yogurt. The health care providers at the spina bifida clinic assure me that this is totally normal for someone with a Chiari II malformation like E has and that she will come around in the next 6-12 months. That being said, we work on it every day.
Tomorrow and Tuesday are big days for E as we will be focusing on her kidneys - she has four kidney-related appointments! Tomorrow E will undergo a DMSA (scan of her kidneys) followed by a Urodynamic Study (measures pressure of the urine in the bladder and kidneys). This is her first DMSA so I don't really know what to expect. When the hospital called to confirm the appointment, they said she would need to be sedated, but when I researched it on the internet it says it's an injection of dye and then a scan but didn't mention anything about sedation. So who knows! As for the UD, E underwent one when she was two months old, and it was horrible! They had to perform the test five times because they could not get an accurate reading. E was hysterical then and she had no concept of fear. I'm terrified of what tomorrow may bring since she now has separation anxiety and is terrified of the unknown (which in a way is a good thing because it's age appropriate). The good news is that Jeff is coming with me for moral support. (You know it must be a horrible test if I've asked Jeff to take off work to come with me!!!) Then on Tuesday, E has another ultrasound of her kidneys. This will be her third one and should be no big deal. Lastly, we will meet with the urologist to go over all the test results. Please pray for all good results, that E isn't completely terrified, that Jeff remains patient and that I don't have a nervous breakdown between now and Tuesday afternoon.
Attached are serveral pictures of E over the last few months: her birthday party with mommy, sitting in her "big girl" chair, cruising in her wheelchair, chilling in her stroller in her pj's (notice the sippy cup!) and sledding with daddy.
As always, thank you for keeping sweet baby E in your prayers and for your kind words of encouragement. You'll never know how much we truly, truly appreciate it!!! I will try to update my blog later this week with the GOOD results from all E's tests that I know we are going to recieve.
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