Wednesday, April 28, 2010

The Good , the Bad and the Ugly

Okay I know I have neglected Mia's blog!!!! In fact, you probably have all given up on me, thinking I was just done with posting. Well, lucky for you, I am not done AND this one may be long!! I am sorry but so much has happened!!

Mia is just getting...."SO BIG"

Let's start with the good!

Mia is sleeping through the night!!!!!! This is HUGE. I am starting to feel like a new person. I have cut down on the caffeine and am trying to actually catch more than 4 hours of sleep a night. Mia began sleeping through the night about three weeks ago and last week we decided to move her out of our room (yes, she was still in with us) and put her back with her sister! Not only do we get to sleep, we get to shower and dress on a daily basis in our OWN room. How great is that? One of these nights, I will even take advantage of our soaking tub...okay, now I'm going a little over board....there is no time for that, especially when you have a blog to keep up with(ha, ha)

Can you say, "on the move"? Mia is moving ALL over! She rolls, scoots and pushes off walls, covering every inch of the downstairs. When I am making dinner, she will roll her way over to me and then.....SIT HERSELF UP!!! You may not know but this is also a very big deal. This means she is not always stuck on her back until someone rescues her and sits her up, she can just do it herself. Not only is Mia moving on the floor, she is now sporting a brand new vehicle! She looks fabulous in her new Pony Trainer!!! Right now she is working on her moonwalk, moving backward is just her style! Like a true girl, I am sure her style will change. With a little help from her Physical Therapist and mommy maybe she will walk forward this summer.

Yes, the good keeps on coming!

Mia is communicating more. Her vocabulary includes these words: kitty, up, side(stands for outside), on, all done and her two favorite words are hi and ball. She signs "more", "all done" and "eat". She will push you away when she is done with you. She LOVES books and pretends to read (this is my favorite-so cute).

And finally, Mia has graduated to the big tub! She is now sitting up on her own and she doesn't need her support tub anymore. The best part of this....Gabriella and Mia enjoyed their first bath together yesterday. I just cried looking at the two of them in the tub together. Oh, how far we have all come!

It's the little moments the girls get to have together that melt my heart. Not only is Mia making fabulous gains, she can now bond with her twin sister, something I have been longing for for 17 months! Until recently, they have done most things separately. They played separately because Mia was so immobile and Gabriella just went on her merry way, paying no attention to her sister. They bathed separately because Mia needed so much support, which also meant double duty for mommy. They slept in separate rooms and on different schedules (they still are on separate schedules). They still ride in separate vehicles, Mia in her special Frog stroller and Gabriella in a backpack(it is too hard for me to push two strollers and a shopping cart). How sweet it is to see them interacting more and enjoying time together. Of course, they fight more too!
Now the bad!
Mia has finished her first helmet therapy. After 13 weeks, we see a significant difference in the shape of her head, although it is far from perfect. It has been recommended that she continue in a helmet until her fontanel closes (the soft spot on the top of a baby's head). Due to her severe hydrocephalus, she has a very open fontanel and there is no way to know when that will close up. From this point on, the helmet will serve no purpose in shaping her head but will prevent her head from growing due to increased pressure. I was disappointed at this news. Although she looks adorable sporting her butterflies, I am anxious to grow her hair and adorn her with hair accessories. I am also concerned about the warm weather, rashes and over heating. But, her neurosurgeon and cranial/facial doctors are both in agreement that this is what is best for Mia.

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.
As for Mia, her night was much less pleasant. I was thoroughly disgusted at Strong's ED! Yes, I know these are harsh words but well deserving! Mia had been running a fever for two and a half days. She had already seen the doctor once and we were just "playing it by ear" since the doctor found nothing wrong with her examination and her white counts were normal. When her fever reached its peak at 104.9 and she began vomiting, her doctor quickly sent us to Strong!

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!

Now, I must end on a positive note! I would like to share Mia's 6 year old sister's words. Last week the kids and I were in one of our deep discussions(we were doing a service project for the Bethany House), talking about God, poverty and being angry with God when things don't go well. I explained that sometimes people can be angry with God and blame him and sometimes you can see it as God trying to teach us something. I gave the example that we could be angry with God for making Mia the way he did but we aren't. She quickly interrupted me and said, "I know why God made Mia different. He has to make people different because He doesn't

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!!