The title pretty much says it all!
Since the last time I have posted; We've celebrated more birth-months - Completed TWO awesome fundraisers; and now planning Halloween costumes and 2nd Birthday preparations!
Alannah's BBQ Luau was a complete SUCCESS! We doubled our goal of 400$; ended up raising 824$!! Amazing right? Her online fundraiser goal was another 400$; beat that by 154$. so all in all we raised 978.00$ to help with medical and SMA Gene Therapy. Alannah also is a proud new owner of an Ipad2! (Thanks to theGSF foundation).
Alannah's overall health has been magnificant, besides a little bump about 3 weeks ago when she completly coded on me. She was rushed to the Emergency Room, and had a 3 day hospital stay; came out of that happy and healthy besides having psuedomonas; which she completed her oral (gtube) anitibiotics, and is almost done with her neb. antibiotics (TOBI) We had a pulmaniary appointment again in IowaCity last Monday; which she passed with flying colors. Dr. Starner was very impressed with her considering she stopped breathing just 3 weeks earlier. And she did AWESOME on the trip there and back. She now (Just like last winter after her 9.5 week PICU stay) has once agian, ANOTHER eye infection..Weird how they always seem to pop up after shes sick. (rx. Vigamox)
Alannah is now starting speech therapy through AEA. And was very eager to show off her singing skills last Tuesday to her new teacher! She loves to play the piano and sing on her Ipad. She also loves going through her ABC's and listening to the animal noises. She thinks the Lorax is a Sheep; and insists that he "Baa's" LOL
She is also accomplished winking, and rolling over (to an extent) She understands the concept of rolling over, and has completed it numerous times. Except now its getting dangerous; she found a way to wiggle in her bath chair, then roll over into the water. NOT COOL!
Alannah FINALLY met people just like her; made me proud she has come so far, and was excited to see her friends I have told her about. I could tell in her eyes she didn't feel left out anymore, and that she wasn't alone in her situation. Sometimes I feel bad about her being around "normal" kids. because she loves to play with them, but doesn't fully understand why they can do stuff that she can't. Atleast she has one friend that plays gently with her, and she sure LOVES her Alecya! :) <3
Alecya is our neighbor upstairs, just a few months younger than Alannah; and the cutest little bug ever!
Having such a special child is such a blessing. Either everyone knows her; or they WANT to meet her. When she goes places; people want to know her, or they already know her and want to know more about her. Yet some people don't cherish their relationships with her (which makes me very sad) Alannah makes huge impacts on everyone she meets; People in our apt. Complex know so much about her; and have never met her! Example being; My dad took her for a walk today while she was in her stander - TWO people; whom I have NEVER spoken too acknowledged her, talked to her, and then saw me, and complemented me on my beautifully smart child. (Most of them know her because of the flyers we put around for SMA Awareness Month -August) and others know her because of her Ambulance ride 3 weeks ago. BUT it doesn't matter HOW they know her..what matters is that they ACKNOWLEDGED her! instead of ignoring her, or giving her dirty looks (Which most people in public aeras do; and it makes me wanna punch them...) My point being; if you know my daughter; or any child with SMA - let it be known your life has forever changed because of your relationship with that child. Life is precious and it's not gaurenteed. These children are here for a purpose. and that purpose is to let people understand to never take anything for granted. And that just because they can't walk and are physically disabled..doesn't mean their brains don't work, and that they don't have feelings. These children are brilliant. Wise. and FULL of emotions! My life as her mom has made me a better person. I can't thank or even express to her how much I appreciate that from her. Words cannot express my love for her either. She's just THAT amazing..
We have opened a facebook page to help with extra medical costs; and suppliments for her diet. (Her insurence WILL.NOT cover them)
www.facebook.com/tutus4Alannah
CheckItOut! :)
I will also still be selling Alannah's wristbands. They're 5.00$ a piece; we have; HotPink,Purple,LightBlue,LimeGreen,&GlowInTheDarkGreen!
E-mail;LindseyCalby@gmail.com for info!
Sunday, September 23, 2012
Tuesday, June 19, 2012
Goals for August; SMA Awareness month
Ok; so not much new with Alannah - Got rid of her G-Tube infection, she made some awesome Fathers Day cards, and we've even been pondering taking her fishing and swimming; except its been WAY too hot! Lately; well the last few days - she's been having a VERY high heart rate; and normal O2. Been good on the heart rate and now a little crackly in the upper lobes in both lungs..nothing a few extra treatments couldn't take care of. She is adapting to her new formula change very well; and we're starting to actually lose touch with our Miralax routine. (She's been able to do without) We also had our family pictures done! Which turned out AWESOME - Thanks to Stephanie Johnson! :)
Ok - so there has been a lot of talk about Alannah's SMA BBQ; well we have decided to post pone it until late August. Since August is SMA awareness month; we figured it would go together GREAT!
We're also doing a fundraiser our goal is 400.00$; we want to get wrist bands; and t-shirts made for Alannah's Fight! The left over money that isn't used for the shirts and wristbands will be donated to SMA Gene Therapy! Fundraiser starts TONIGHT! You can either donate through GiveForward; or you can order off of the Partylite website I have set up! If we can get enough donations to be able to get the T-shirts, Wristbands, AND donate more than 200$; THAT would be AMAZING! Lets see what we can do in 1 month!
Give Forward! Fighting to Cure SMA for Miss Alannah Jay
Fighting to Cure SMA; ONE candle at a time
(Also; whoever donates for the wristbands and T-shirts will be receiving one of each for contributing to our fundraiser!)
We are completely excited to also say we almost have enough money saved up to get rid of Alannah's crib; and get her a TWIN SIZED BED!! (It'll be easier to get to her; and do her treatments!)
Here are some Family pictures;
Ok - so there has been a lot of talk about Alannah's SMA BBQ; well we have decided to post pone it until late August. Since August is SMA awareness month; we figured it would go together GREAT!
We're also doing a fundraiser our goal is 400.00$; we want to get wrist bands; and t-shirts made for Alannah's Fight! The left over money that isn't used for the shirts and wristbands will be donated to SMA Gene Therapy! Fundraiser starts TONIGHT! You can either donate through GiveForward; or you can order off of the Partylite website I have set up! If we can get enough donations to be able to get the T-shirts, Wristbands, AND donate more than 200$; THAT would be AMAZING! Lets see what we can do in 1 month!
Give Forward! Fighting to Cure SMA for Miss Alannah Jay
Fighting to Cure SMA; ONE candle at a time
(Also; whoever donates for the wristbands and T-shirts will be receiving one of each for contributing to our fundraiser!)
We are completely excited to also say we almost have enough money saved up to get rid of Alannah's crib; and get her a TWIN SIZED BED!! (It'll be easier to get to her; and do her treatments!)
Here are some Family pictures;
Monday, May 28, 2012
Hello another Antibiotic..
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)
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)
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
Thursday, April 26, 2012
Doctor's Update
Well Iowa City was a trip...that's for sure. The ride there..well if that wasn't a LONG ride, I don't know what is. Alannah watched the cars drive by, and I tried getting her to look at the cows up on the hill..She ignored me..like usual. Got to the hotel (Which I made my reservation on the FIRST floor, and got an employee voucher - because my dad works at Baymont- they told me I could use it on the hospital rate..WRONG. ended up using ALL out cash for a hotel room. Thanks to my mom we ended up having more money. Then I freaked out on the receptionist; the gave us a SECOND floor room, after I specifically said FIRST! --GRRR-- then Alannah freaked out and dropped her sats low. She ended up on bi-pap the rest of the night; watching Netflix on my laptop.) I didn't sleep worth crap because Alannah was up every hour. Zach on the other hand...slept like a baby.
We got to the hospital around 8am. If you haven't been to Iowa City Hospital..it's flipping HUGE! And valet is 10$ a day.. BOGUS! Alannah freaked once again (yet was satting 100 when we pulled in) because she's errie on doctors, dropped her sats to 93 the entire time we were there. Although we did a blood gas; which was all completly normal, her weight is 21 lbs 3 oz, and she is 31.5 inches long! Come to find out; Alannah's bi-pap machine isn't syncernizing with her breaths, nor is it detecting her breaths. so she needs a new bi-pap machine. We're getting the Trilogy. We have to go back to Iowa City May 26th. Dr. Starner wants to make sure the new bi-pap and all her pther equipment are working properly for her. She was satting around 93 when she slept; get her a new bi-pap mask, now shes 96 when she sleeps.
Today I brought her to the park with Abbey and Beth; and their kids. Lilly and Kingston. She got to swing; and lay on the slide and take some pictures! (She's such a diva) Sometimes I get sad knowing I can't chase my child around the park; or push her on the swings in the park. But then I always think to myself. My child will ALWAYS cuddle with me. (something EVERY mother charish's) She'll never be able to walk away from me when I'm talking to her; she'll never be able to slam her door in my face; hide from my; or get lost in a store. She will always be my little big girl, and ALWAYS be mommy's baby. I truthfully Love her with all my heart; and wouldn't want her any other way. If there was a word to express my love, appreciation, and gratitude for my child..I'd say it....but the love for my child...is completly unwordable.
Check out our pictures from Iowa City and from the park today!
We got to the hospital around 8am. If you haven't been to Iowa City Hospital..it's flipping HUGE! And valet is 10$ a day.. BOGUS! Alannah freaked once again (yet was satting 100 when we pulled in) because she's errie on doctors, dropped her sats to 93 the entire time we were there. Although we did a blood gas; which was all completly normal, her weight is 21 lbs 3 oz, and she is 31.5 inches long! Come to find out; Alannah's bi-pap machine isn't syncernizing with her breaths, nor is it detecting her breaths. so she needs a new bi-pap machine. We're getting the Trilogy. We have to go back to Iowa City May 26th. Dr. Starner wants to make sure the new bi-pap and all her pther equipment are working properly for her. She was satting around 93 when she slept; get her a new bi-pap mask, now shes 96 when she sleeps.
Today I brought her to the park with Abbey and Beth; and their kids. Lilly and Kingston. She got to swing; and lay on the slide and take some pictures! (She's such a diva) Sometimes I get sad knowing I can't chase my child around the park; or push her on the swings in the park. But then I always think to myself. My child will ALWAYS cuddle with me. (something EVERY mother charish's) She'll never be able to walk away from me when I'm talking to her; she'll never be able to slam her door in my face; hide from my; or get lost in a store. She will always be my little big girl, and ALWAYS be mommy's baby. I truthfully Love her with all my heart; and wouldn't want her any other way. If there was a word to express my love, appreciation, and gratitude for my child..I'd say it....but the love for my child...is completly unwordable.
Check out our pictures from Iowa City and from the park today!
Sunday, April 22, 2012
We're off to see the Wizard...the wonderful Wizard of Iowa City?..
Ha ha; Did you like that?? Yeah..I made that up.. Anyways. Well the update on Alannah is the last week she has been sating VERY low. Almost had me worried the hospital was in our future. Although she wasn't running a fever, having thick secretions, or even colored ones. she was sating in the lower 90's, but yet was smiling, laughing, and playing with her toys. I called Sarah on a daily basis. "What should I do now" "Does this sound right?" "HELP!!" Well after a full day on bi-pap, and some extra CPT's after her normal respiratory treatments, we are doing VERY well today; and I am SUPER grateful for it. (Especially since we're going to see a new pulmonary Doctor on Tuesday)
Alannah is going on her FIRST road trip tomorrow, and me and Zach are kinda nervous to see how she is going to react. She's never been in the car longer than 30 min. and with her being all weird this last week. This is just going to be a HUGE deal for us. I'm NOT looking forward to packing all of her necessities, but the night out of town, in a hotel with just the 3 of us..It'll really be nice. A little get away for us. I'm hoping if we get to the hotel at a good time, we can do a little PT in the pool. Gotta show daddy all she's learned!
Alannah is going on her FIRST road trip tomorrow, and me and Zach are kinda nervous to see how she is going to react. She's never been in the car longer than 30 min. and with her being all weird this last week. This is just going to be a HUGE deal for us. I'm NOT looking forward to packing all of her necessities, but the night out of town, in a hotel with just the 3 of us..It'll really be nice. A little get away for us. I'm hoping if we get to the hotel at a good time, we can do a little PT in the pool. Gotta show daddy all she's learned!
Today after the bath, she kept trying to roll over. she's understanding the point on how to do it, now it's all just strength..I think if she put her mind to it. She can do it...I mean..Motivation is the key right? lol as I always say.
"SMA WILL NOT BE BOTHERSOME TO US!"
I'll make sure to post some pictures tomorrow of her and her road trip. I'm sure she's going to enjoy it!
Sunday, April 15, 2012
Splish Splash..
Alannah had an issue yesterday-- NOTHING resp. related. She got her G-tube switched out last week; to a MIC KEY. well anyways; me and Karen (Her nurse) noticed it looked a little irritated and red. I noticed yesterday it looked a little swollen, hard, and SUPER irritated. I took her in; turns out Alannah has a case of Cellulitis- Cellulitis is a form of staph infection. But not to worry; I guess this formisn't very serious, and sound clear up within the next 48 hours of being on antibiotics. Poor baby kept holding it and touching it in her sleep.
This morning we decided to get up around 7:45am. I let her watch some Dora for I could catch a little more sleep--Thats wayy too early for me! lol-- She had a bath this morning, and agreed to letting me brush her teeth. She really likes the taste of kids toothpaste lol. She also showed me how super smart and strong she is. She kept taking her right arm (Which is amazing. because she NEVER uses her right arm/hand for anything) and kept bringing it above her head and arching her back and streching; then laughing about it. She also smacked her left hand into the water, looked at it, then did it again. Turned her head to the right (which she also NEVER does) and did the same exact thing with the right hand. then went crazy with the splashing! Even got me a little wet!! She's soo amazing! Here is a video!
This morning we decided to get up around 7:45am. I let her watch some Dora for I could catch a little more sleep--Thats wayy too early for me! lol-- She had a bath this morning, and agreed to letting me brush her teeth. She really likes the taste of kids toothpaste lol. She also showed me how super smart and strong she is. She kept taking her right arm (Which is amazing. because she NEVER uses her right arm/hand for anything) and kept bringing it above her head and arching her back and streching; then laughing about it. She also smacked her left hand into the water, looked at it, then did it again. Turned her head to the right (which she also NEVER does) and did the same exact thing with the right hand. then went crazy with the splashing! Even got me a little wet!! She's soo amazing! Here is a video!
Wednesday, April 11, 2012
Home Sweet Home
Finally after 2weeks of being moved in; we are FINALLY completly unpacked. I can't believe how beautiful this new apartment is! Alannah adores her new bedroom- she NEVER wants to leave- I finally filled our fish tanks with some fish yesterday. We got 4 guppies 2 Spotted Corys and 1 Molly in the kitchen. 1 Halfmoon Beta in Alannah's bathroom, and 1 Redtail shark and 2 Danios in our master bathroom. The tanks look pretty amazing if you ask me. Alannah thinks the fish are pretty cool as well.
Alannah finally recieved her new AFO's; with some CUSTOMIZED shoes. She loved them at first; now she's beginning to hate them -she HATES her feet being messed with; especially since we constantly are trying to strech out her heal cord- We also recieve some new adapter switches for her yesterday, she's more interested in blowing 'ubbles' (Bubbles) We're trying to figure out ways to get some are splints to correct her wrists as well. Michelle (PT) had to write Medicaid AGAIN to try and get approved for a stander..I'm seriously starting to get very anxious about all her new equipment. She'll like it all in the end, but it's taking forever to recieve--which reminds me..I'm still waiting to recieve her new stroller as well..eh!
Health wise; Alannah is doing GREAT! We just had her G-tube switched out to a MIC Key, and she didn't cry one bit!! I like it to an extent; but I think it's too buldgy. We go to Iowa City on the 24th to see Dr. Starner, and then on May 16 for some communications doctor. -Let the Traveling begin! LOL-
We are also sad to say we lost our favorite nurse Seth; he was moving to Ames because he is getting married in May. So now we have Karen Monday, Tuesday, Friday. Mindy on Thursdays, and Anne on Wednesdays. (TOO MANY NURSES!!) I wish we could have a nurse avalible all the time. Zach picked up a side job doing Repo's; and I can never go because no one wants to sit with Alannah. Pretty bogus if you ask me; Not like she's a handful by any means. plus; she'd be sleeping. it's whatever.
Here are some pictures of the Apartment and our Fishys! Enjoy!!
Alannah finally recieved her new AFO's; with some CUSTOMIZED shoes. She loved them at first; now she's beginning to hate them -she HATES her feet being messed with; especially since we constantly are trying to strech out her heal cord- We also recieve some new adapter switches for her yesterday, she's more interested in blowing 'ubbles' (Bubbles) We're trying to figure out ways to get some are splints to correct her wrists as well. Michelle (PT) had to write Medicaid AGAIN to try and get approved for a stander..I'm seriously starting to get very anxious about all her new equipment. She'll like it all in the end, but it's taking forever to recieve--which reminds me..I'm still waiting to recieve her new stroller as well..eh!
Health wise; Alannah is doing GREAT! We just had her G-tube switched out to a MIC Key, and she didn't cry one bit!! I like it to an extent; but I think it's too buldgy. We go to Iowa City on the 24th to see Dr. Starner, and then on May 16 for some communications doctor. -Let the Traveling begin! LOL-
We are also sad to say we lost our favorite nurse Seth; he was moving to Ames because he is getting married in May. So now we have Karen Monday, Tuesday, Friday. Mindy on Thursdays, and Anne on Wednesdays. (TOO MANY NURSES!!) I wish we could have a nurse avalible all the time. Zach picked up a side job doing Repo's; and I can never go because no one wants to sit with Alannah. Pretty bogus if you ask me; Not like she's a handful by any means. plus; she'd be sleeping. it's whatever.
Here are some pictures of the Apartment and our Fishys! Enjoy!!
Friday, March 9, 2012
Crabby Lanners
So as the week has progressed; my child has become crabbyer and meaner. I have no idea what her mal-function is, but i'm pretty sure it's still her teeth..GRR..
Our new weekly goal is Mommy's workouts, and Alannah's outside time. This child LOVES being outside (especially for being cooped up inside during the winter) She screams and smiles and giggles. I LOVE IT! The other day we went to Papa's and Grandma Stacie's house and she got to swing. We also washed my car...she had a huge shocked face on..it was cute. Today we went over to Grandma Sharon's and she got to see some of her cousin's and her Grandma Gigi. She loves her cousin Cailyn (She's 3) After playing for two hours, she's wore out..especially since I woke her up from her nap early.
My bestfriends Abbey and Beth made a fan page for Alannah. Check it out 'Alannah's Fight' They've also set up a donation drive for her. Every penny counts! And will be donated to the Spinal Muscular Atrophy associations to help find a cure for my princess and all the other princess' and prince's! Also we had planned on a birthday party for Alannah in December; but as most know Alannah was VERY sick; so it was postponed. SO! We've decided, the end of May, we're going to have a 1.5 year birthday party; Friends and Family are more than welcome to attend-we'll also have a donation drive there as well, and we're thinking about planning a raffel around September! I can't wait to finally get some of this stuff on the ball. My daughter; and every other little kiddo deserves it!
My manager (He's SUPER awesome!) is going to help build Alannah a new changing table, so we can do treatments and other stuff on a more comfortable table, since my child decided she wants to grow 5" a month.. (HA!) So if anyone would like to help with that; Menards gift cards would be AWESOME! :)
Our new weekly goal is Mommy's workouts, and Alannah's outside time. This child LOVES being outside (especially for being cooped up inside during the winter) She screams and smiles and giggles. I LOVE IT! The other day we went to Papa's and Grandma Stacie's house and she got to swing. We also washed my car...she had a huge shocked face on..it was cute. Today we went over to Grandma Sharon's and she got to see some of her cousin's and her Grandma Gigi. She loves her cousin Cailyn (She's 3) After playing for two hours, she's wore out..especially since I woke her up from her nap early.
My bestfriends Abbey and Beth made a fan page for Alannah. Check it out 'Alannah's Fight' They've also set up a donation drive for her. Every penny counts! And will be donated to the Spinal Muscular Atrophy associations to help find a cure for my princess and all the other princess' and prince's! Also we had planned on a birthday party for Alannah in December; but as most know Alannah was VERY sick; so it was postponed. SO! We've decided, the end of May, we're going to have a 1.5 year birthday party; Friends and Family are more than welcome to attend-we'll also have a donation drive there as well, and we're thinking about planning a raffel around September! I can't wait to finally get some of this stuff on the ball. My daughter; and every other little kiddo deserves it!
Monday, March 5, 2012
Spring is just around the corner...
Today was supposed to be the day Zach and I got our tattoos (For Alannah) but my brother was sick, so next Monday is the date! (Can't wait; SUPER excited!!) So instead we decided to have a nice day together. We had lunch at Lahacienda; had a 3 min. chat with two ladies about Arizona and it's weather. After our convo. with her, Zach and I kind of went on a long conversation about Alannah; and all of her medical needs. (Kinda our typical 1-on-1 convos.) We went to go pay our bill, and the ladies paid it for us. As we went to go thank them, she kindly responded "It's fine; no big deal. Take care of that little girl of yours" Completly suprised..We've seen stuff like that before, but never thought it'd happen to us. Such a kind gesture really has me thinking some people are super kind hearted.
Which just brings me to my next problem which bothers the hell out of me...I'm still pissed about how you don't see any Muscular Distrophy donation places around Des Moines. WE NEED A CURE! So if anyone has any ideas on how I can get a little fundraiser started; PLEASE comment or E-mail me..
( LindseyCalby@gmail.com )
We are counting down the days to move...have I expressed enough how excited we are? OH! And Alannah's nurse -SETH- said Alannah sat by herself today for 30sec. and was looking around and smiling like 'I'm a big girl!' She always seems to amaze me everyday. Before bed tonight she was studying my lip movements, and shook her head no. she's a dork sometimes.
Tomorrow Alannah has a doctors appointment with Dr. Boochi; we're going to have her G-tube burned again and set an appointment to have it switched to a MIC-KEY. I'm thinking the valve in this one is getting bad, considering it wants to spit food back at me now..GROSS. We're having her 'Papa' come with us tomorrow..he can be the bad guy...I don't like hurting her. Hopegfully if it's still nice out, and doesn't take long, I'm going to bring her over to my parents house so she can swing. She LOVES the swing. Bring on the Sunshine!!
Which just brings me to my next problem which bothers the hell out of me...I'm still pissed about how you don't see any Muscular Distrophy donation places around Des Moines. WE NEED A CURE! So if anyone has any ideas on how I can get a little fundraiser started; PLEASE comment or E-mail me..
( LindseyCalby@gmail.com )
We are counting down the days to move...have I expressed enough how excited we are? OH! And Alannah's nurse -SETH- said Alannah sat by herself today for 30sec. and was looking around and smiling like 'I'm a big girl!' She always seems to amaze me everyday. Before bed tonight she was studying my lip movements, and shook her head no. she's a dork sometimes.
Tomorrow Alannah has a doctors appointment with Dr. Boochi; we're going to have her G-tube burned again and set an appointment to have it switched to a MIC-KEY. I'm thinking the valve in this one is getting bad, considering it wants to spit food back at me now..GROSS. We're having her 'Papa' come with us tomorrow..he can be the bad guy...I don't like hurting her. Hopegfully if it's still nice out, and doesn't take long, I'm going to bring her over to my parents house so she can swing. She LOVES the swing. Bring on the Sunshine!!
Friday, March 2, 2012
So we've been trying to figure out a way to help Alannah have a little less gravity when playing; So Rhonda (OT) gave us the idea to make some sort of slings for her arms, needless to say after a few hours of sewing..it turned out OK. Alannah was very thrilled to be able to finally have a little more help when playing with her toys, and was using her right arm and hand a lot more! (Made me super happy!!)
I also taught her the song 'I'm a little tea-pot' She was trying soo hard to sing along with me, and say tea-pot. She's also starting to say piggies (For toes) it's more like 'iggies' but it's still super cute to hear her try and say new words.
I've been trying my best to get people to understand the situation I'm in for my age. I am no longer in school because I got so far behind when she was sick November-December 31, 2011; BUT I do plan on continuing my education this Summer or Fall to receive my RN, LPN, and also take Respiratory Therapy classes. I am finally back at work, but only for 3 days a week, and am starting to be financially stable again. I'm just very grateful I have Alannah in my life to keep me going; and to keep me motivated to be as successful as possible!
I also taught her the song 'I'm a little tea-pot' She was trying soo hard to sing along with me, and say tea-pot. She's also starting to say piggies (For toes) it's more like 'iggies' but it's still super cute to hear her try and say new words.
I've been trying my best to get people to understand the situation I'm in for my age. I am no longer in school because I got so far behind when she was sick November-December 31, 2011; BUT I do plan on continuing my education this Summer or Fall to receive my RN, LPN, and also take Respiratory Therapy classes. I am finally back at work, but only for 3 days a week, and am starting to be financially stable again. I'm just very grateful I have Alannah in my life to keep me going; and to keep me motivated to be as successful as possible!
Friday, February 24, 2012
...Something to look forward too
Tuesday Alannah had another appointment with Dr. Mathews. We are going to be seeing a pulmonologist in Iowa City April 24; along with some sort of speech and communications doctor as well. (Kinda looking forward to it!!) Alannah is also starting to give people dirty looks; especially if they're talking about her, or even looking at her. Shes been such a brat lately. With teething, and just lacking sleep because of no naps...You'd think she was a 3 year old honestly.
I'm pretty sure this is going to be our last month staying here at Windflower Apartments. We got approved for these newer apartments; I'm personally super excited about it!! (Plus Alannah will have a little bit more room for medical equipment and her toys)
If any of the other SMA mommys' read this; What do your children do for shoes?
Alannah has AFOs, and we're going to be getting some casting done for little ankle braces, but NOTHING will fit this child's feet for anything! Along with I'm needing some ideas for a bigger changing table/treatment table.
We also had her Aunt Stephanie do her belated birthday and fall pictures!
I'm pretty sure this is going to be our last month staying here at Windflower Apartments. We got approved for these newer apartments; I'm personally super excited about it!! (Plus Alannah will have a little bit more room for medical equipment and her toys)
If any of the other SMA mommys' read this; What do your children do for shoes?
Alannah has AFOs, and we're going to be getting some casting done for little ankle braces, but NOTHING will fit this child's feet for anything! Along with I'm needing some ideas for a bigger changing table/treatment table.
We also had her Aunt Stephanie do her belated birthday and fall pictures!
Monday, February 13, 2012
Snow..Snow..Snow..
I'm personally starting to think Alannah is having withdraws from not being able to go outside..She's going to hate the fact that this is going to happen every few months; especially summer time as well. Yesterday was her first day out of the house besides for a doctors appointment. She played with her two cousins, and she loves to play roll the ball. She was also super excited to see her 'papa'. Before we left she kept saying A-lannah. and Love you. I'm really starting to love the fact that she's been trying so hard to talk, and forming new words everyday. Alannah's new favorite toys are mylar balloons. She got a Valentines Heart balloon and a Dora one this weekend. she LOVES them.
Alannah is now in the 18% for her weight. before she was sitting at 9%, and all around a 72% for height and weight. She is 23 lbs now. And is also wanting to taste things again. Not like we can give her things to eat, but she likes water and juice to be dripped into her mouth, then she smacks her lips together and says 'yumm'!
Hopefully I can get this other app tomorrow for these apartments. It'd really be nice to get out of the ones I'm currently in now. They're not healthy for Alannah.
Happy Valentines Day!!
Alannah is now in the 18% for her weight. before she was sitting at 9%, and all around a 72% for height and weight. She is 23 lbs now. And is also wanting to taste things again. Not like we can give her things to eat, but she likes water and juice to be dripped into her mouth, then she smacks her lips together and says 'yumm'!
Hopefully I can get this other app tomorrow for these apartments. It'd really be nice to get out of the ones I'm currently in now. They're not healthy for Alannah.
Happy Valentines Day!!
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