Hello beautiful people! =)
It has been a LONG time since the last blog post.
WHERE DOES TIME GO?!?! Why does life happen so fast?!? 😉
The quickest way I know to update y’all is by coping and pasting information from our Facebook page so here are some of the major, fun things that have happened since the last blog post! =)
Annalise is all about rolling and pushing up onto all fours. She is REALLY trying SO hard to figure out how to crawl. (She does move… Just with sliding her head since she can’t lift it.)
She’s also been figuring out that if she looks certain ways to find her toys, she CAN reach for them or move towards them!!! This is a huge developmental step!
She thinks it’s funny to rock herself side to side and always makes sure you are watching her when she does!
She thinks it’s really funny when you lay down next to her to play!
Clapping is still one of her most favorite things and now “coloring” (an app on the iPad) is also her favorite! Her first painting is already hanging on our fridge! 😉
Yesterday she had an OT appt and did pretty well with her eating and chewing! She’s still in the same place regarding baby food. She hasn’t grasped the concept of chewing or biting so we are trying to really work with her on biting/chewing and of course her swallowing.
Today was her weekly vision/special Ed therapy session. She did really well with sitting in her chair and wearing her vest! (Annalise got a Benik vest to help keep her core straight when doing sitting exercises.) She even was manipulating her hands/arms into purposeful movements (Instead of just flailing both hands to do stuff).
Friday morning we have a very long meeting with her entire “team”. They like to do a yearly revisit with all the Drs to kind of “reassess” and talk about what to continue to do, what else we need to do, concerns/questions…. The whole shabang.
Today we spent 2 hours meeting with most of her team to go over everything.
This is the major stuff that happened today:
Annalise weighed in at 19lbs 1oz and was 29.5inches long!
We first met with her dietician. Since she just got completely switched over to pediasure last week (from infant formula… We were weaning her off slowly so we didn’t mess up her digestive system too bad ;)), we are supposed to continue our plan we had in place last time we met (which is 2 pediasure bottles a day, a little bit of salt to get enough sodium in, her multivitamin, and at least a bottle (8oz) of water a day). Next month, we go back to see if it’s working alright, to see if she is gaining her necessary weight (she’s been at a plateau for awhile now so they are wanting her to get back on a curve of weight gain) and all that jazz. If it’s not enough, we will have to switch “formulas”.
We even just got the okay today to give her some regular whole milk and orange juice ON TOP OF the pediasure (she has to have 8oz. of something other than pediasure…it was supposed to be water but she’s not taking it very well so it can be water, milk, or oj to make up for that 8oz per day.)
-We don’t think she can taste since she’s never had any reactions to different “flavors”. We think she reacts to textures so the thinness of water compared to her formula/pediasure throws her off.-
Then we met with the lady who takes care of needs like wheelchairs/devices and what not. I talked to her about other items we could use for home (that our in home PT and CCVI therapist would like for her). She’s going to order those things through insurance and if they get denied then our state programs can try and get them through their funding sources.
Next we saw her pediatrician. I told her how we have been noticing her being raspy sounding when she’s sitting more in the last couple of weeks. We thought maybe it was just her posture and not having good core strength. But since we have been using the Benik vest and she still does it… We thought it could be enlarged tonsils or adenoids blocking the airway.
So…. She’s gonna put in a referral to the ENT dr just to check her tonsils and adenoids to make sure that’s not causing the problem. They will also check for reflux, which can cause the raspy sound when sitting as well, to see if she needs a reflex medicine to help.
We also talked about trying aquatic therapy! We don’t know if she will be able to or will like it but we wanted to give it a try… so she put in a referral for that as well! =)
We talked to our social worker as always and then after that she got her tetanus and pertussis shot. (So she won’t have to get another shot for awhile now. Yay!)
A year ago today, Annalise visited the eye doctor for the first time!
During our pregnancy and the beginning of her life, they always told us that there was a HUGE possibility that she would be deaf and blind since she was missing so much of her brain.
–story time!– We will NEVER forget when we were at the hospital when she was born and a specialist (who we had never met before… And who we refer to as “Dr. Bad News”) walked up to Annalise, turned the flashlight on her iPhone on, ran it across her eyes ONCE for ONE second…. Then said “YUP! She’s blind and deaf.” (insert eye roll here ;))
(Needless to say, we haven’t seen Dr Bad News since.)
At that appointment, we found out that she did in fact have all the structures of her eyes… Including the optic nerve (which is supposed to be located in the part of the brain she is missing!!!)
And as you can see… A year later… She still has those beautiful blue eyes and better vision than anyone thought possible!!! =)
We are so incredibly grateful for the team Annalise does see and will continue to see! Even though they had their “doubts” at the beginning, they have never ruled out anything. They no longer focus on the prognosis of death and instead focus on giving her the best life possible now.
We are so proud of our girl and so blessed by her. We can’t wait to see what else she accomplishes!
Today we went and saw Annalise’s neurologist for a routine checkup that we do every 4-6 months.
I asked her if I could snap some pics of her last scan that was done back in December from her seizure stay. (We will do a new scan when she turns 2.)
I know a lot of people ask and wonder what a scan looks like, so I figured I would post them!
We also asked her neurologist if she were to give us a percentage of how much brain Annalise has… She said that since her brain isn’t shaped normal (structurally) it’s hard to give that number. BUT what she did say is that it is LESS THAN A THIRD. (LESS than 33%).
She couldn’t get over how well Annalise sees and tracks things either because she has NO part of her occipital lobe (which controls all things seeing). That’s one of the things that still baffles her because technically Annalise SHOULD be blind without that part of the brain.
Going to neuro appointments is probably one of my favorite visits because it ALWAYS reminds me that we serve a God who is SO Sovereign. He is in control of ALL things. He is so, so, so good.
WE NEED YOUR HELP/IDEAS/THOUGHTS!!!
A sweet friend of mine mentioned the other day about a fundraiser idea she had for us. This idea has always been in the back of our heads since Annalise was born (since my sister was debating that instead of the gofundme) and we know several people who have done it for their own needs…. We just didn’t know if there would ever be enough interest to go through with it.
We have always had our gofundme page for donations BUT that has been up since BEFORE she was BORN. The money that has been raised through that is SO close to being used up. (And I mean within a couple months!) I was the main income in our household (while Kevin finishes up school) and as all of you know… I quit my job to stay home with Annalise and give her the best life possible. We have made every adjustment we can to make that donated money last as long as possible. But when you think about it as an income…. That amount is LESS than what I was making in a year. That money has been used for bills, living expenses, and everything Annalise needs (formula, diapers, clothes, etc.)
If we go forth with a NEW fundraiser idea, our hope is to raise enough to continue what we are doing until Kevin finishes up school! (Which is NEXT year!!!)
We are wanting to know if there would be enough interest in doing a TSHIRT FUNDRAISER?!?!?!?
We can design our own unique shirt and almost all of the profits go to us (of course there is a base cost for the shirts and printing BUT the more shirts that are bought- the lower the base cost- which means more profit for us!)
If we hear positive feedback about this idea, then we would LOVE to hear what YOU would want to see on the shirt!
— IS THERE A WORD OR PHRASE THAT YOU ASSOCIATE WITH ANNALISE AND OUR JOURNEY? —
Of course, the first phrases that come to our minds is “Hope anchors the soul” or “Hope for Annalise” BUT if we do this, we want something on our shirt that YOU ALL want to see and would buy!
PLEASE PLEASE PLEASE comment on this post and 1)tell us what you think and if you would consider buying a tshirt and 2)give us ideas on what the shirt should say!!!
I do have a few FUN ideas for if we do go forth with this fundraiser….
Like…. maybe if we reach certain amounts of shirts sold, we will give out different “prizes”???? Maybe whoever buys the most shirts, will get a really good surprise????
(Just throwing this in here just in case there are people on the blog who don’t have facebook and want to throw their ideas in ;))
OKAY! Those are all the big updates from our page. =)
Annalise is still continuing all her therapies and weekly visits!
Home health nurse is once a week, CCVI (her vision therapies) is about once a week, Infant Toddler (in home PT) is about once a month, center based PT through Children’s Mercy is every other week, OT through Children’s Mercy is about every 6 weeks… we have our first aquatic therapy session in a couple weeks so we are excited to see how Annalise does with that as well! We have even talked about starting her with a speech therapist here soon!
Today we went and saw the ENT doctor for the first time! We went to see them regarding her tonsils/adenoids and reflux. For the past several weeks, when she sits she has become raspy so we were checking to see if those were the reasons why. They did a scope to check it all out. Her tonsils and adenoids are small and just fine! So nothing to worry about there! She did a very tiny amount of reflux… the doctor called it “cobble stoning” since it was a line of tiny little bumps “like a cobble stoned street”. It was nothing serious and doesn’t require any type of reflux medicine so that was good! So what we have come to the conclusion to is that the raspy sounds are just due to her extremely low muscle tone. The muscles in her throat just aren’t strong enough at times and “collapse”, making the raspy breathing sound happen. Soooo… the only way to “fix” the raspy sounds is just to find a position where she doesn’t do it.
While we were there, we also did a hearing screen test since she has never had one done! Typically they do a newborn screen after they are born but since our scenario was different, she didn’t have any of the normal testing done. She passed 2/3 on her left side but failed her right side (the side of her shunt). BUT!!!! They did another test to see if there was anything “blocking” her eardrum preventing the sound waves to accurately read the test. Because she has been a little congested and now teething again, that congestion was indeed blocking her eardrum. So that “failed” test wasn’t necessarily completely accurate. Since she has always responded to sounds, they aren’t worried or concerned about her hearing. We will have to do annual hearing tests though just to keep checking on it!
Right now since we don’t have her wheelchair, we keep her old stroller and infant car seat in our trunk at all times so that when we run errands or go places, we put her back into the infant seat in the stroller. She can lay in the stroller by itself, IF we have tons of blankets surrounding her and making a good support system. SO it is MUCH easier just to use the old car seat still since it always provided a good support system for her.
BUT GOOD NEWS!!!!
Today while we were at the ENT, I GOT THE CALL!!!!!!
Her wheelchair is coming THURSDAY!!!!!!! So in just THREE days, they will be bringing it to our house so that they can adjust it and show us all the tricks! YAYAYAYYAYAYYAYAYAYAYAY! Can you tell just how EXCITED I am?!?! 😉
Annalise has been doing really well with being in a siting position more frequently. She’s FINALLY at the point where she will sit tall for longer periods of time now!!! Before, as soon as you would sit her in your lap or in her chair, she would slump almost right away since she has such low muscle tone and not a lot of good core strength. I think she’s finally starting to like sitting and exploring her world that way now! YAY!
Along with that, her neck muscles have gotten a lot stronger! You can get her to control her head for seconds at a time when she’s really focusing!
Another SMILESTONE that we were just talking about with her PT at Children’s on Friday… is that when she drops a toy, she has been looking for it. All babies start out by thinking that toys “disappear” when dropped or out of sight and eventually they start realizing that they just have to look down or around for it. So we have finally reached the stage where Annalise KNOWS that it’s still there, she just has to find it! WOOHOO!
She continues to be our incredibly happy girl, always smiling and talking away (for us but never for anybody else- hehe!). She is all about her toes- again! I think it’s because she’s starting to teeth again so anything in the mouth is a good thing! ;P She still claps, she still reaches for things, she still rolls fully, she still tries to scoot around, she still tracks things, and she still thinks the weirdest things are funny.
AND GET THIS?!
She’s been starting to show MORE emotions!!!! She will occasionally let out little whines and “cries” when she’s mad or hungry! SAY WHAT?!?! The last few days she’s let out a lot more of it due to her teething and it’s so cute! Yup. I said it. The face she makes when she does it… the little wrinkled nose, squinty eyes… oh so cute. Call me crazy! 😉
Well… I think that is everything… everything I can think of anyways 😉
We hope you all have a GREAT week and we can’t wait to show you her new ride later this week!!!!!!!!!
As always… here are all the pictures since the last blog post!
Facebook page: Prayers for the Pragels or you can search @hopeforannalise
GOFUNDME page: http://www.gofundme.com/hopeforannalise
We will let you know soon if and where to order t-shirts!!!! 🙂