Friday, June 29, 2012

Stepping Out

Today I made the decision to totally step out of my comfort zone. During our OT session on Wednesday, our therapist mentioned the 'Parent 2 Parent' program in Whatcom County. It's a support group for families with children with special needs and/or developmental delays. They can match you with families with a child with a similar disability or medical need, or that has a child around your childs age. They also run support group meetings and activities for siblings. She mentioned a picnic for the program.

Today was the picnic.

We have so many supportive friends and family. Everyone in our lives always has kinds words for us and been nothing but amazing. I really can't complain! I do however, struggle with having other parents to talk with that have a child with special needs. I have met some AMAZING moms online that have children with SB. Even some that were born almost to the day Stella was! I also met a mom in Seattle who has a son that is older with SB. These parents are my live line! It makes this journey a little less lonely.

Sam was working tonight so I took all 3 kids to the picnic. It was at Fairhaven park. I wasn't sure what to expect. They had little stations set up all around for kids. Bubble blowing, face painting, and basketball, and a ton of other activities. There were kids (13 and older) who are trained in babysitting kids with special needs who were around to help. The boys had a blast!! I tried to watch them but give them some independence to interact with other kids. I was hesitant at first to talk to anyone. But, after awhile I warmed up and was chatting with a few different parents. Most of them had children in the 'Birth to 3' program.

I left feeling really good. I plan on getting involved more and they have meetings for 'Dads Only' that I know Sam wants to be a part of. Though no one there had a child with SB, just meeting other families that have special needs children was nice.

Next week is a BIG week for Miss Stella. She has a long day at Childrens. First off is a renal ultrasound at 7:30am. We need to check on her kidneys to make sure they are nice and healthy. Afterwards is a test called a Urodynamics test. She has to lay on a table for an hour while getting xrayed. They will test her bladder and what muscles work when she has to urinate. They also see how much her bladder holds and checking for an reflex. I can be there with her and feed her and comfort her during the test.

After that we meet with a Urologist. I'm hoping everything is going good and we can continue to cath her once a day. She has something called Neurogenic Bladder/Bowels that will require some pretty heavy duty surgery when she is older. For now her cathing is more to check how much residual urine is left in her bladder.

Then in the afternoon she has another MRI. It's been over 2 months since her last one. Her head went up 2 cm from 2 to 4 months. I was a little worried at her 4 month wellness visit but it still puts her in the 85th percentile. We meet with her amazing neurosurgeon after the MRI to talk about placing a shunt. I'm trying not to worry. I know and trust they will not place one unless they were positive it was time. And if it's time, then I am happy she was able to make it so long without one. It's a pretty straight  forward procedure but it does require holes drilled through the skull and that is just a scary idea. The hospitalization is only about 24 hours afterwards.

We are fiercely working on her therapies and yesterday she rolled over 6 times in a row from tummy to back. I can see everyday the fire in those bright blue eyes. She is just blowing us away with how strong she is.

Sunday, June 17, 2012

I wanted to do my Finn blog entry but I want to do it with a good updated picture. So I will do that tomorrow! Things with Stella have been pretty good lately. She is such a good baby. I mean, at 2 months she was sleeping though the night and just very content. Lately shes been more fussy than usual. Not wanting to be put down and put in her swing. I worry when she is having a crying spurt but then she will be happy and smiling and back to her normal self.

She is just so hungry all the time! I spend hours nursing her and then end up supplementing with formula also when I got nothing left! I am hoping it's just a growth spurt. She is now 12 1/2 pounds and 25 inches long. My 2 main worries right now are a UTI or her needing a shunt. She has an MRI on July 5th. I am praying that foremost she does not need a shunt but if she does it is not an emergency situation.

I have been struggling a bit lately when I see other babies her age doing things she quite can't do. She is trying so hard to roll from back to tummy. She CAN roll from tummy to back, which is great! I just have to get over the sadness I feel. Especially when kids her age will be starting to walk. I think it's normal to periodically to feel a little sad but I try to snap out of it fast. We are lucky and blessed that she is thriving so well.

We recently added massage therapy to her list of daily activities. She seems to really be liking it. She is reaching more for toys and cooing and babbling a lot. When I took her to her 4 month wellness visit I filled out a questionnaire about her development. She scored very high in each category, except gross motor. She was a little below where a "typical" 4 month old is. It was great to see she scored so high in the communication area.