Grr; So..Alannah is; once again on another antibiotic, Obviously the "cellulitus" ended up sticking around and turning into puesnamonus.*Usually seen as a respiratory infection; but we were lucky enough to have it as a skin bacterial infection. YAY us! NOT-My poor girl is in SO much pain; and did I mention this thing looks GROTESQUE. (lol) And of course; on Memorial Day weekend, I spent my Sunday fighting with Walgreen's pharmacy, and Alannah's insurance about approving what just so happens to be the ONLY dang medicine that'll kill this germ..Took about 4 hours; We WON.
We've finally cut half our bottom teeth; now awaiting the other side and some top teeth -I myself am cutting my wisdom teeth *Sympathy please? ;) NOT fun for either of us.
Thursday Alannah received her Stander and new Stroller! I've been telling her about her stander for about 2 weeks now. She was SO excited to get fitted for it; and then when she stood up for the FIRST time EVER; The look on her face was priceless. Brought tears to my eyes. She lite completely up; smiled ear to ear, looked around at everything. And then she locked eyes with me and her dad; as if she were saying "Look mommy, Look daddy; I'm doing it. I'm standing up all by myself!" I loved that moment.
The head support of her stroller was a little off; so Troy is going to tweek it a bit; and bring it back sometime this week just in time for our Zoo Trip Friday! By the way...She HATES the stroller.
Friday; Doctors...they "tortured" her like always..(Joking)But I had them culture her G-tube that day - Got the results Sunday. Our weight is now 22lbs 4 oz. (Starting Tolerex this week. Wish us luck!)
Saturday was our lunch date with Amy Blakeburn; an old friend of mine. Our last lunch date was when Alannah was first diagnosed. We weren't able to have another one until now because Alannah got really sick in November. We went to Applebees. And let me remind EVERYONE; My child seriously has a sports addiction. She did really good in public too; was good at the table, didn't give other people dirty looks (Which is her new usual thing..shes a sassy butt) Then once 4o'clock rolled around, Lannah was ready for a nap. I gave her her blankey, and she tried to go to sleep; except she had an issue. I hear "Mmm, Mmm!" I said " what Lannah" and she points at the lights... It was "Too Bright" in there for Princess Lanners. Too funny!
Alannah got to go to her FIRST Graduation Party Sunday as well. (Congrats Emily Cusick!) And even though she slept the entire time; She still received just about as much attention as if she were awake! :)
Alannah got to spend some time with her Grandma, Papa, and Aunt Cassidy this weekend as well. And we rented her Happy Feet 2. She didn't want to come home Saturday, she wanted to stay with Nana and Papa, she was SOO MAD when I put her in the car. :( Sorry pumpkin; over nights aren't allowed!
Today; Today is Memorial Day. We spent the entire day at Grandma Sharon's. Alannah got to see all of her cousins. And she actually was nice to all of them as well. She spent sometime inside; cuddled with her Uncle Anthony; and watched a handful amount of Dora; and held all of her cousin's hands. (Usually she's mean to them and cries and yells.)
Lanners has been in bed since 8:45PM; due to NO NAP. And before I can end this blog. I want ALL of my readers to say a nice long prayer; A sweet prayer, one that endures; LOVE, STRENGTH, FAITH, And REASSURANCE.
Alannah and I have made a NEW Friend :)
Her name is Ella Hunt; Ella just reached her 9 Month Birthday; and has been battling a respiratory problem at home for a little over a week. Earlier this week, things got a little crazy; and she ended up in the ER; where she was treated, sent home, and ended up back in the hospital later that night. Ella was shortly intubated later on that day/early AM; because she needed to rest and have an easier time maintaining her SATS. Yesterday afternoon; they were able to extubate Ella very successfully, but was having a rough time with treatments that evening. And is still having a bit of a rough time today. Please help Ella gain strength; see love; and give her parents faith and hope in all of the miracles of God; Ella reminds me soo much of Alannah; She's such a gorgeous little peanut. Love you Ella!
(If I can edit this; I'll post pictures of Alannah this week, and a picture of Ella!-- some reason I can't upload any tonight)
Monday, May 28, 2012
Thursday, May 17, 2012
Mad Man in the White Coat...
AH..CRAZY week so far I swear. Well to start off our week.
In this house- we do LAZY Monday's..so you can only imagine our Monday. I got caught up on some PartyLite orders. Alannah had physical therapy (which mind I add..she HATES. and acts like she's being tortured and dismembered..)
Tuesday we had out 15 month check up (At a day shy of 17 months old--Doctors these days can't count I guess) During her check...We've discovered Alannah is 34.5" long (99.4% for length) 21 lbs and 14.5 oz ( 42% for weight) and 18" head circumference. All in all- she's NOT gaining any weight; and is SUPER freaking tall...(haha) So we had a chat with the nutritionist- Switching from Neocate Jr. to Tolerex. Well during her "doctor feel me up" time we noticed her belly is SUPER sensitive and she screams..Off to radiation we went..(Me being the mom I am--I'm thinking her G-Tube blew open her stomach- thus why she's not gaining any weight..etc.) Turns out my kid has a GIANT-- by giant I MEAN HUGE!! piece of poo stuck in her bowel..HELLO Mirlax (Which we do every other day because we experience major blow outs) As I'm viewing Alannah's X-ray-- I see the best thing I have EVER seen on my child..Something a mom of an SMA kiddo loves to see, CLEAR LUNGS! My heart melted- I was overwhelmed. He compared it to 5 months ago when she was rushed to the ER when she stopped breathing and I had to give her CPR- THEY LOOK AMAZING! HUGE weight lifted off of my shoulders! We go our shot; and headed home..she didn't even cry! My tough girl!
Wednesday she had Occupational Therapy- Alannah got to color and show off her new slinky..and guess what news we got then...Her new Stroller and Stander are IN! and waiting in the office to be delivered and set up! (I think I'm more excited about both items more than she or her dad is...) We ended up having to skip our Iowa City trip to the Communications and Disabilities Doctor --Personal Reasons-- Alannah ended her Wednesday visiting her Grandma and swinging on the swings with her Papa and Aunt Cassidy.
As our Thursday is reaching it's mid-day point. Alannah is being goofy trying to throw herself out of her chair, yelling at me because I won't give her my pens, and being very mean to Mindy her nurse.. She's a major sass..I think she misses Karen already! :) And may I add..I'm not ready for work tomorrow..grr...
We are also thinking about having a cook out for Alannah's 1.5 year birthday sometime in June. Alannah wasn't able to have her HUGE 1st birthday blow out I planned for her because we were locked up in the hospital :( So if plans go good with daddy- we're going to do it BIG!! And We can't wait!! We also just celebrated our 17 month birthday yesterday!! YAY! Go Alannah!!
In this house- we do LAZY Monday's..so you can only imagine our Monday. I got caught up on some PartyLite orders. Alannah had physical therapy (which mind I add..she HATES. and acts like she's being tortured and dismembered..)
Tuesday we had out 15 month check up (At a day shy of 17 months old--Doctors these days can't count I guess) During her check...We've discovered Alannah is 34.5" long (99.4% for length) 21 lbs and 14.5 oz ( 42% for weight) and 18" head circumference. All in all- she's NOT gaining any weight; and is SUPER freaking tall...(haha) So we had a chat with the nutritionist- Switching from Neocate Jr. to Tolerex. Well during her "doctor feel me up" time we noticed her belly is SUPER sensitive and she screams..Off to radiation we went..(Me being the mom I am--I'm thinking her G-Tube blew open her stomach- thus why she's not gaining any weight..etc.) Turns out my kid has a GIANT-- by giant I MEAN HUGE!! piece of poo stuck in her bowel..HELLO Mirlax (Which we do every other day because we experience major blow outs) As I'm viewing Alannah's X-ray-- I see the best thing I have EVER seen on my child..Something a mom of an SMA kiddo loves to see, CLEAR LUNGS! My heart melted- I was overwhelmed. He compared it to 5 months ago when she was rushed to the ER when she stopped breathing and I had to give her CPR- THEY LOOK AMAZING! HUGE weight lifted off of my shoulders! We go our shot; and headed home..she didn't even cry! My tough girl!
Wednesday she had Occupational Therapy- Alannah got to color and show off her new slinky..and guess what news we got then...Her new Stroller and Stander are IN! and waiting in the office to be delivered and set up! (I think I'm more excited about both items more than she or her dad is...) We ended up having to skip our Iowa City trip to the Communications and Disabilities Doctor --Personal Reasons-- Alannah ended her Wednesday visiting her Grandma and swinging on the swings with her Papa and Aunt Cassidy.
As our Thursday is reaching it's mid-day point. Alannah is being goofy trying to throw herself out of her chair, yelling at me because I won't give her my pens, and being very mean to Mindy her nurse.. She's a major sass..I think she misses Karen already! :) And may I add..I'm not ready for work tomorrow..grr...
We are also thinking about having a cook out for Alannah's 1.5 year birthday sometime in June. Alannah wasn't able to have her HUGE 1st birthday blow out I planned for her because we were locked up in the hospital :( So if plans go good with daddy- we're going to do it BIG!! And We can't wait!! We also just celebrated our 17 month birthday yesterday!! YAY! Go Alannah!!
Monday, May 14, 2012
The Future is there!
So; It's been forever since we've updated! We we're very busy battling a nice house-hold Sinus Infection! Well so here's our update! First let me start off with this!
The Spinal Muscular Atrophy family has lost a few of their warriors in the last month; one that everyone has been thriving off of.. Little Miss Avery! Avery has done a magnificant job about getting numerous amounts of people to be aware of SMA. Also getting people to donate generously torwards Dr. Kasper's Gene Therapy- and there is a man/women that will match every donation up to 500,000$! Amazing right? Little Miss Avery passed away right before hitting her 6 month birthday; but has that stopped her? NOPE! She is STILL touching people; and getting people to understand Spinal Muscular Atrophy!
There is also a petition going around about SMA Gene testing as well! Wow; so much has happened. and soo much has come about in such a small amount of time; BUT..lets not let the publicity die down so quickly!
MJ Queen (another one of our lovely SMA Warriors) Has put together 8 videos! YES 8! Of every child she knows (Or that she has been tagged in) to help show people "The Faces of SMA" and let me tell you..These Videos are AMAZING! All of these children are absolutly precious! I'll post some. One of her videos is actually I believe being watched by Ellen! (And something about if we get enough likes on the video she'll show it on her show?!!) Now tell me that wouldn't be just something super!!!!
Now that I've updated about our SMA life; here is an update on Alannah!
Alannah is about to reach her 17 month birthday! and let me tell you; terrible 2's could not come any quicker...haha. She's a grumpy little sassy butt! Probably doesn't help she's cutting 11 teeth all at once..talk about pain? She has also went thru another growth spurt! Grr; she's going to be taller than me before I know it! Last time she was measured she was 41". Well I'm 5'1! you do the math... :)
Alannah is also back on antibiotics for a possible respiratory gunk; (Rather be safe than sorry; had a nasty yellowish color-but could have been due to improper treatments-idiot nurse) Alannah has also mastered the "setting off her pulsox"...But only likes to do it in the middle of the night...GRR!!
We're starting to have a problem keeping weight on this child though...She isn't doing anything to burn the weight; so I'm not too sure where it's going, unless she's growing too fast to keep up with her weight...And instead of sleeping all day; I can keep her up until midnight; and this kid still wants to get up at the crack of dawn...She's going to drive me crazy with this new sleeping schedule! On the Plus side--She's blowing kisses now...I love it !!
Rest in Paradise little Angels of SMA
here's a few videos from Miss MJ Queen!!
The Spinal Muscular Atrophy family has lost a few of their warriors in the last month; one that everyone has been thriving off of.. Little Miss Avery! Avery has done a magnificant job about getting numerous amounts of people to be aware of SMA. Also getting people to donate generously torwards Dr. Kasper's Gene Therapy- and there is a man/women that will match every donation up to 500,000$! Amazing right? Little Miss Avery passed away right before hitting her 6 month birthday; but has that stopped her? NOPE! She is STILL touching people; and getting people to understand Spinal Muscular Atrophy!
There is also a petition going around about SMA Gene testing as well! Wow; so much has happened. and soo much has come about in such a small amount of time; BUT..lets not let the publicity die down so quickly!
MJ Queen (another one of our lovely SMA Warriors) Has put together 8 videos! YES 8! Of every child she knows (Or that she has been tagged in) to help show people "The Faces of SMA" and let me tell you..These Videos are AMAZING! All of these children are absolutly precious! I'll post some. One of her videos is actually I believe being watched by Ellen! (And something about if we get enough likes on the video she'll show it on her show?!!) Now tell me that wouldn't be just something super!!!!
Now that I've updated about our SMA life; here is an update on Alannah!
Alannah is about to reach her 17 month birthday! and let me tell you; terrible 2's could not come any quicker...haha. She's a grumpy little sassy butt! Probably doesn't help she's cutting 11 teeth all at once..talk about pain? She has also went thru another growth spurt! Grr; she's going to be taller than me before I know it! Last time she was measured she was 41". Well I'm 5'1! you do the math... :)
Alannah is also back on antibiotics for a possible respiratory gunk; (Rather be safe than sorry; had a nasty yellowish color-but could have been due to improper treatments-idiot nurse) Alannah has also mastered the "setting off her pulsox"...But only likes to do it in the middle of the night...GRR!!
We're starting to have a problem keeping weight on this child though...She isn't doing anything to burn the weight; so I'm not too sure where it's going, unless she's growing too fast to keep up with her weight...And instead of sleeping all day; I can keep her up until midnight; and this kid still wants to get up at the crack of dawn...She's going to drive me crazy with this new sleeping schedule! On the Plus side--She's blowing kisses now...I love it !!
Rest in Paradise little Angels of SMA
here's a few videos from Miss MJ Queen!!
^^^Here's the one Ellen's been keeping her eye on
^^^^Alannah's in this one
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