Sunday, December 26, 2010
All four of our kids bring us immeasurable joy!
Wednesday, December 1, 2010
Friday, November 19, 2010
My wonderful friends patiently listened to all my preschool worries. Their honest input helped me step out of my mind set. I needed their points of view in order to see all sides. After a long discussion and hours of analyzing what was said, I finally had an epiphany.
Since Mia has been born, we have said "yes" to everything that has been offered to her. In our eyes, the more services the merrier. We agreed to accept whatever Mia was offered so that she could have every advantage possible. Somehow, we lost sight of that when thinking about preschool. With Mia doing so well, we felt like we did not want to deprive her of the opportunity to attend the same school as her brother and sisters. What we should have seen is, that we are not depriving her by putting her in a different program, we are continuing to take advantage of every service offered. If she can get a more intense program that will continue to bombard her with language, socialization, therapies, etc, then that is where she needs to be. To put her in the same school as her older siblings would deprive her of the intense head start she needs.
Of course, part of what clouded our thoughts was doing what is also right for Mia's twin. That too has become clear (thanks to one of those wonderful girlfriends). Her words kept ringing in my head, "Sounds to me like you are saying that you want them together. You don't want to split them up." I guess I was saying that all along but couldn't hear myself (don't ask me how that happens but it does). I don't want them separated! They tell me everyday, in their own two year old ways, that they don't want to be separated.
Thanks to my friends and my mind's countless hours of sleep deprivation, we are looking into CP of Rochester's inclusion program. We have heard only positive feedback from other parents.
Now off to bed!
Thursday, October 28, 2010
The problem is I have a difficult time not being in charge. I don't want anyone else to do those things for her. I am selfish and a bit of a control freak! I am very blessed to have wonderful friends and family who will help us figure all of this out. Most importantly, we have Daystar!!!! I breathe easier when she is there and I know they will monitor her and take such good care of her. They will practice her walking, read her books, sing her songs and love her. I cannot say enough about how absolutely wonderful they are there! What more can I ask for?
Tuesday, October 5, 2010
Sunday, August 22, 2010
Thursday, July 1, 2010
Even the girls get pooped from all the spinning (the messy house is a constant side effect)!
I will start the spinning wheel with Mia's Dr. appointments. We met with her wonderful cardiologist. It began with just a weight check that put Mia over the edge as well as her sister, who tagged along to supervise Mia's visit! They tried to do an EKG but unfortunately were unable to because Mia was hysterical crying (and so was sissy). The Dr. was able to listen to her heart with his stethoscope and get her to smile maybe once or twice. Because Mia shows no signs of cardio stress in her daily life and her heart sounds good, tests are not imminent. She should have an ultrasound and an EKG but will have to be sedated. If she needs to be sedated at some point for another reason, we will schedule those tests. Otherwise, we will just continue to monitor her.
Finally, the eye doctor. We have been patching Mia's eye left eye for 8 weeks. Her right eye turns in and appears weak. After patching for eight weeks, the eye continued to turn in more. We are going to patch for another eight weeks. We patch her eye two hours a day. Hopefully we will see some improvement this time....if she keeps the patch on. By the end of the 6th week, she had figured out that whenever I walked and/or looked away, she could whip her patch off. Even sitting with her for the full two hours, she pulls the patch off constantly. So, we battle and sometimes...she wins!!
Mia's therapies are going very well. She is now using a stander, in addition to her walker, in order to increase her weight bearing. She uses the stander for about an hour a day and we are trying to increase that. Although, I have to be honest, I am having a hard time fitting everything in: 2 hours of patching, an hour of standing, time in the walker, therapies, baths and trying to get outside in the pool with the other kids. All of this between tennis, soccer, swimming, library and play dates for the older kids. Anyway, these are the busy days of summer! Mia's speech is growing by leaps and bounds. She tries to copy everything sissy says. She even repeated her first string of three words, "I don't know", which sounds like all one word! But we know exactly what she is saying. And if you can believe this, she is beginning to count with me!!!
Thursday, June 3, 2010
The best part of May was Mia moving forward in her walker. So far the best part of June is the 14th Annual Stroll for Strong Kids. Although Dave, the kids and I have participated for eight years, this is only our second year participating as a team, Mia's Marchers. Our team grew from 24 last year, raising $2,126.00, to 48 this year, raising $3,385. Way to go Mia's Marchers!!! It was so moving to see all the yellow shirts supporting Mia. We are so blessed to have such an amazing support system of beautiful friends and family. I cannot find the words that express how eternally grateful we are for them and for all of Mia's doctors, nurses and therapists. Yesterday, we honored them and all the other families they have helped. We have met many families during Mia's stays at the hospital. Each child has had to fight and overcome so much in their short lives. It just doesn't seem fair. They truly are my heroes!!!
Wednesday, April 28, 2010
Yes, the good keeps on coming!
Monday, Mia will visit the ophthalmologist again. Her right eye has been turning in. This was happening in the Fall but had corrected itself after her shunt replacement at the end of the year. Unfortunately, we have been watching it get worse. That eye also tears quite a bit. Her vision therapist expressed some concern as well so off we go. Hopefully, it will be something minor!
Now for the ugly!
The day of my son's birthday, we ended up in emergency with Mia. Yes, parties had to be postponed and once again, my oldest kids had to roll with the punches, even on a birthday. Thankfully, they have wonderful grandparents who helped make the night special and carried on a special birthday without us.
After waiting for a few hours, they did an x-ray of the shunt to make sure there were no knots in the tube or clogs. We waited over two hours for the results. In the meantime, I asked if Mia could have something to eat and/or drink seeing she hadn't eaten much since her fever began and she had vomited what little bit she did have. Of course, she could not have anything in the case that she may need surgery.
Two hours later, they came in to take her for a CT scan, a normal occurrence for Mia. Now, we had just had a scan two weeks prior so Mia is very used to this machine. By saying she is used to it does not mean she likes it! In fact, she HATES it!!! She screams every time! They ALWAYS strap her in like a mummy and tape her head tight so she cannot move, although she tries very hard!!! Well, the technicians on duty that night, decided they didn't want to wrap her tight. Their plan was to wait until she calmed down. I kept telling them that will NEVER happen, unless she screams for hours. They taped her head and left her screaming in the machine for 25 minutes. At that point, I asked them to remove her if they weren't going to take the scan. She already has a fear and this was definitely making it worse. Not to mention the fact that CT scans are going to be frequent occurrences for the rest of her life! So, they sent us back with no scan (this has never happened before).
When we got back, they wanted to catheterize her and get blood. Well, as you can imagine, the cath was unpleasant to say the least AND surprise, surprise.....SHE HAD NO URINE! I had only been telling them for 5 hours now that she needed something to drink. Luckily, she peed, on her own, after they removed the tube. It was very little but they were able to catch it. Next, the blood and IV line. Basically, after much screaming, they got the line in. In the meantime, they took the blood and set it aside. By the time they got the IV line secured, the blood they took clotted and could not be used. They were not able to flush the IV line so they couldn't use that either. They decided not to torture her anymore and just sent her home. The bottom line is, we left there with a shunted baby still presenting with a fever (which they hadn't taken in two and a half hours before they discharged us), no CT scan and no blood work. Fever, CT scans and blood work are actually critical when diagnosing a shunted child! That trip to the ED was absolutely useless! Thankfully, her fever broke the next day and we chalk that experience up to just "another day in the life of Mia"!
Back to the good!
want everyone to be the same. That would be boring. And, He wants to see how the parents love them when they are different. It's like I've always said mom, Miama is SO cute with that BIG head and little face and BIG head and little body. She is just so cute!!! God gave her to us because we love her and we think she is just so cute." I was almost in tears. I could not have said it any better!!