Callista's Second Annual Benefit was a huge success! We had a great turn out and raised an awesome amount of funds. We've got two walks/runs we will be doing soon so our team is set. Plus, don't forget to check out Socks 4 Surgery, Gracie's Gowns, and Team Iron Aiden on facebook, we will be supporting these organizations by sponsoring child gifts. We also will start the planning stages of home renovations for Callista. Since our home is two story, it's not conducive to her future wheelchair. An additional bathroom with a wheelchair accessible shower and sink as well as remodeling the room attached to the garage are in the works! Our goal is to make our home work for our daughter and to encourage her independence as much as possible. Anything she can do for herself is what we strive for!
I cannot thank our supporters enough for all of the hard work that went into making the benefit a success. Those who donated items, money, time, and prayers were an integral part of why this fundraiser worked out so well! Everyone who came said the food was delicious and they had a lot of fun. There were so many auction items and fantastic prizes to give away. We could not have asked for a better day. I hope to post pictures from our "photo booth" to her facebook group soon.
Thursday is a neurosurgery check up to make sure she is healing properly and to get cleared for therapy. There was a surprise call today from feeding clinic and they had a cancellation so we will be seeing them on Thursday also!
Callista
Showing posts with label physical therapy. Show all posts
Showing posts with label physical therapy. Show all posts
Tuesday, July 30, 2013
Tuesday, March 26, 2013
Bubble = Popped
It's been awhile, but today I did it. I had myself a pity party (balloon free, of course). How can you love your life so much and hate it at the same time? I love Callista, she's perfect in every way for me. I know she's different than other babies, and I make it a point to stay away from places where there are going to be babies... I like staying in my "Callie Bubble" where all I see is her development, her growth, her milestones. But today all the imperfections in my little bubble were pointed out to me by life in general.
It all started with the MRI phone call and the list of what I like to call "the no questions". Because our answer is almost always no. After all the technical questions, (surgeries, med changes, etc.) we answer:
The second thing happened inadvertently through conversation with some lovely visitors at work. We were talking about my work in disabilities and encouraging parents to be advocates for their children. The lady I was working closely with asked me how my daughter was today after seeing her picture in my office. The talk around the table turned to children and another woman made the comment something to the extent of "I can't imagine having a child with a disability. I have a daughter. All I had to worry about was if she'd grow up to be a ballerina, but she played softball instead." Most moms won't understand but those words wounded me. My daughter will never be a ballerina or play softball... If you can't imagine having a child with a disability, there are many mothers out there who have children with varying degrees who can enlighten you. Having a child with a disability is: endless doctor visits, physical therapy, occupational therapy, surgeries, clinics, check the shunt, have an MRI, convince the person in charge that your kid needs bracing. Rinse, repeat. Squeeze your spouse in somewhere and if you're lucky, find a few hours of sleep.
Normally I could take these things in stride. And then I held an adorable little tiny baby. Yep, I broke my rule and hung out with a baby. But she was so darn cute! And her little ears were pierced. And she smiled at me. And I held her. I was fine, it was good. Until I was stupid and asked how old she was. Three months.... Three months old and light years beyond what Callie is doing. I cried. It's so ridiculous, I know. But the tears came, and I had to give her back and leave. I think it's the moment where you come face to face with things you'll never have that make it hurt.
So yeah, I had "a day" and I will be over it by tomorrow. I am certainly not proud of my lapse in mental status but hey, it happens. I will really feel better after spending some good quality time with my little monster next week. Other babies may be developing faster than her, but no baby will ever be cuter than her ;)
It all started with the MRI phone call and the list of what I like to call "the no questions". Because our answer is almost always no. After all the technical questions, (surgeries, med changes, etc.) we answer:
- Can she sit up? No.
- Does she eat anything by mouth yet? No.
- Does she hold toys? No.
- Does she have feeling in her legs? No, not for the most part.
- Is she mobile? No.
- Does she babble? Yes. (Score!)
The second thing happened inadvertently through conversation with some lovely visitors at work. We were talking about my work in disabilities and encouraging parents to be advocates for their children. The lady I was working closely with asked me how my daughter was today after seeing her picture in my office. The talk around the table turned to children and another woman made the comment something to the extent of "I can't imagine having a child with a disability. I have a daughter. All I had to worry about was if she'd grow up to be a ballerina, but she played softball instead." Most moms won't understand but those words wounded me. My daughter will never be a ballerina or play softball... If you can't imagine having a child with a disability, there are many mothers out there who have children with varying degrees who can enlighten you. Having a child with a disability is: endless doctor visits, physical therapy, occupational therapy, surgeries, clinics, check the shunt, have an MRI, convince the person in charge that your kid needs bracing. Rinse, repeat. Squeeze your spouse in somewhere and if you're lucky, find a few hours of sleep.
Normally I could take these things in stride. And then I held an adorable little tiny baby. Yep, I broke my rule and hung out with a baby. But she was so darn cute! And her little ears were pierced. And she smiled at me. And I held her. I was fine, it was good. Until I was stupid and asked how old she was. Three months.... Three months old and light years beyond what Callie is doing. I cried. It's so ridiculous, I know. But the tears came, and I had to give her back and leave. I think it's the moment where you come face to face with things you'll never have that make it hurt.
So yeah, I had "a day" and I will be over it by tomorrow. I am certainly not proud of my lapse in mental status but hey, it happens. I will really feel better after spending some good quality time with my little monster next week. Other babies may be developing faster than her, but no baby will ever be cuter than her ;)
Friday, March 22, 2013
Spring Break (AKA busy!)
The first week of April I am on spring break, but it will be anything but a break. We tried to cram all of Callista's appointments into this week so I wouldn't have to take any days off work. In other words, not much of a break, but we will be getting stuff done!
Tuesday she has a full head and spine MRI with sedation followed by a neurosurgery follow up. They're just doing this routinely to take a better look than the quick MRIs that don't give as good of a picture. Specifically, her neurosurgeon wants to look at her ventricles (which have been the same or better on each MRI) and her Chiari malformation how that it's been a year since her decompression. They will look at her spine as well, I assume to get a baseline if she ever starts having tethered cord symptoms.They will give us the results after she wakes up when we go to neuro clinic so at least we don't have to wait and worry.
Then Thursday we do WIC renewal and Friday is clinic day. We will do the usual clinic with a renal ultrasound again to check her kidneys. They have also been stable ever since her vesicostomy. It should be an uneventful visit.
Callie has been using a kidwalk in therapy for trial and she loves it. She puts a little weight through her knees and ankles. You can tell she enjoys standing up. We will be starting the process to get one of our own. The ortho guy will be at our appointment next week to observe her during therapy and write recommendations for bracing. We're one step closer to getting our baby girl on the move :)
Tuesday she has a full head and spine MRI with sedation followed by a neurosurgery follow up. They're just doing this routinely to take a better look than the quick MRIs that don't give as good of a picture. Specifically, her neurosurgeon wants to look at her ventricles (which have been the same or better on each MRI) and her Chiari malformation how that it's been a year since her decompression. They will look at her spine as well, I assume to get a baseline if she ever starts having tethered cord symptoms.They will give us the results after she wakes up when we go to neuro clinic so at least we don't have to wait and worry.
Then Thursday we do WIC renewal and Friday is clinic day. We will do the usual clinic with a renal ultrasound again to check her kidneys. They have also been stable ever since her vesicostomy. It should be an uneventful visit.
Callie has been using a kidwalk in therapy for trial and she loves it. She puts a little weight through her knees and ankles. You can tell she enjoys standing up. We will be starting the process to get one of our own. The ortho guy will be at our appointment next week to observe her during therapy and write recommendations for bracing. We're one step closer to getting our baby girl on the move :)
Friday, February 8, 2013
Recovering (all of us!)
We are finally headed down the long road of recovery. Callista from her illness of course, but her daddy and I from sleeping on a hospital couch, cafeteria food, and little to no rest. They released her Monday (20 minutes after the snow started, thanks again) with oxygen for at night if she drops her saturation. They didn't send us home with a weaning plan, but thank goodness for our wonderful pediatrician. We couldn't ask for anyone better to be on her side! He gave us the go ahead to wean, suggested we stop the antibiotics, and said that if he didn't know what Callie had just been through he never would have guessed because she looked so good. Now if we could just get our one year wellness visit it! Apparently you are required to be WELL for that.
It seems as though our little one has started growing and developing like a weed just within the last two weeks. She is now expanding her babbling sounds and I swear we are thiiiiiiiiiis close to saying mama. She talks non stop at this point and is becoming such a big girl! Her head control is developing nicely and she is starting to get some strength in her core. She has started reaching for things and touching things. Her whole body movements have increased by a lot as well. Miss Callista has had a long break from therapy after being sick, but next week she is back to working her little baby butt off. Her grandpa made her a therapy bench so she will not get lazy at home either!
It seems as though our little one has started growing and developing like a weed just within the last two weeks. She is now expanding her babbling sounds and I swear we are thiiiiiiiiiis close to saying mama. She talks non stop at this point and is becoming such a big girl! Her head control is developing nicely and she is starting to get some strength in her core. She has started reaching for things and touching things. Her whole body movements have increased by a lot as well. Miss Callista has had a long break from therapy after being sick, but next week she is back to working her little baby butt off. Her grandpa made her a therapy bench so she will not get lazy at home either!
Friday, January 4, 2013
Clinic Day
Clinic this morning went much better than expected. There was so much positive attitude I was in shock! Usually we are stuck listening to complete strangers tell us what our daughter can't and will not do. This time, it was praise after praise. I am always terrified of MRIs and ultrasounds. You just never know what is going to show up.
Today's MRI showed that her ventricles are even smaller than the last time they scanned. You could visibly see more brain matter in today's imaging than in the ones from July. We love our nurse practitioner from Neurology so much as she took the time to sit down with us and go through image by image and tell us what they meant.The renal scan (kidneys and bladder) showed no changes from the scan they did in September. So her vesicostomy is working and no more damage is being done to her kidneys. The urology doctor said her vesicostomy looked great as well.
The physical therapist was impressed with her new found head control, tummy time skills, and core strength. She told us that on her notes in September, she was very limp and had no head control, so this was a huge step forward. She gave us suggestions on how to work on sitting up, so we will be starting those ASAP! (And grandpa will be building her a therapy bench lol). We go back again in three months, and hopefully she will have enough upper body strength to qualify to get her first set of leg braces!
My proudest moment of all today was getting to share the fetal surgery experience and benefits with neuro (the awesome one). Callista performed well, wiggling her tiny toes and responding to touch on her feet. I hope that they start sharing the option with the soon-to-be SB moms they consult with. We were their first fetal surgery baby and we're FINALLY proving it is worth it.
On a side note: I bought some things for Callista's first birthday party today. WHAT?! Yes, that made it real for me. It's coming in just a few weeks and I have no idea how our very first year with our daughter has flown by so quickly. I am so excited to share the big day with family and friends.
Today's MRI showed that her ventricles are even smaller than the last time they scanned. You could visibly see more brain matter in today's imaging than in the ones from July. We love our nurse practitioner from Neurology so much as she took the time to sit down with us and go through image by image and tell us what they meant.The renal scan (kidneys and bladder) showed no changes from the scan they did in September. So her vesicostomy is working and no more damage is being done to her kidneys. The urology doctor said her vesicostomy looked great as well.
The physical therapist was impressed with her new found head control, tummy time skills, and core strength. She told us that on her notes in September, she was very limp and had no head control, so this was a huge step forward. She gave us suggestions on how to work on sitting up, so we will be starting those ASAP! (And grandpa will be building her a therapy bench lol). We go back again in three months, and hopefully she will have enough upper body strength to qualify to get her first set of leg braces!
My proudest moment of all today was getting to share the fetal surgery experience and benefits with neuro (the awesome one). Callista performed well, wiggling her tiny toes and responding to touch on her feet. I hope that they start sharing the option with the soon-to-be SB moms they consult with. We were their first fetal surgery baby and we're FINALLY proving it is worth it.
On a side note: I bought some things for Callista's first birthday party today. WHAT?! Yes, that made it real for me. It's coming in just a few weeks and I have no idea how our very first year with our daughter has flown by so quickly. I am so excited to share the big day with family and friends.
Subscribe to:
Posts (Atom)