Iep Journey a mom’s 22q confessions.Read More
It has been a few weeks since Bella has been in the 5th grade and so far so good. Bella got few A- and she staying on top of organizing with the hops system. No lost folders this year for our Bella.
Bella has filed trip coming up soon to Art Prize in Grand Rapids, A Dog Run which this post is going to share more about and if you love our Bella please help. Bella will run and she loves running despite the leg pains from the mild form of cp which is different from the 22q. Today we had psychology and physical theraphy it went well Bella is learning how to cope with pain stress from school (socially it has been a struggle) especially this week. One of the girls was picking on her Bella told the teacher and hopefully it will be the end of that. We can’t all like everyone and at this age they are trying to discover their likes and dislikes including each other. 5th graders have so many strong emotions then add wonderful dose of purberty starting and you get why I don’t have a lot of time to blog like I used to.
Ms Bella aka ms social butterfly keeps me on my toes. This week a few of her friends have been sending text messages to my cell phone. ( I don’t have time for that) lol but it is nice to see that only one girl has given Bella a difficult time and Bella choose to ingore her and focus on the good friends she does have. We are not born for everyone to like us and that is perfectly
I am so proud of Bella and how far she has come along.
The leg pains where she would wake up crying in pain has stopped since Bella has been active and getting treatments with Pt and loves to run. I see a future track star here.
Bella has come a long way. speaking of running Bella is raising funds for the Dog run their school mascott is the Bulldog
Bella needs everyone to help chip in to help her meet her fundraising goal of 150
If you can read the letter she has below and donate anything even just 5 that would be a huge help
Bella say’s she will make a thank you video after her run and do a bit of running for everyone and show her streaching
she has learned as well as how she stays on top of her school work with the new organize system we have been doing.
Dear Friends and Family,
I am lacing up my sneakers next month and running my best at the Dix Street Elementary Dog Jog/Fun Run. This event raises money for me and my classmates by providing all kinds of support, programs, and events for the students, staff and families of Dix Street.
I would appreciate it (and so would my 350 schoolmates) if you could help support me.
Thanks in advance for your support!
About this fundraiser:
Dix Street Elementary is a school where student learning thrives and children feel good about the place they call their school. We believe that this is because of the incredible students that attend our school, the awesome staff who believe that relationships with students are key to optimal learning and more importantly the incredible support of our families. We could not engage in the wonderful learning opportunities and the fun things we do here without your monetary support. Please know that no amount is too small. Your ongoing backing and support are both truly appreciated.
Your donations will help pay for:
Family Fun NIghts
March Reading Month
Open House and much more.....
here is Bella direct donation link
So when you hit the form submission to subscribe there is an option on my website where people can ask questions. I have a Q and A Page and also welcome any questions any one might have at the end of some of my blog post or videos.
One of our reader writes this question to me and here is my answer I hope this post can help someone else going though something simular please like and share if you found it helpful
Hey Amanda I came across your blog when I watched the video of your daughter, Bella, who didn't need the surgery for her VPI. I have a 4 year old daughter, Angela, who has VPI from her 22q deletion. I was wondering whether you would mind sharing Bella's journey of living with VPI and how she got to the point that no surgery is needed, through speech therapy? her speech condition as she grows up. I greatly appreciate
Here is my answer
I have an 11 year old daughter name Bella who you all know and love from or website and videos. Bella started attending speech theraphy when she was really small as part of early on prevention program and healthy start. Bella started to sound hypersnale that’s code for vpi and vpi is short for Velopharyngeal Insufficiency (VPI) and Apraxia - Apraxia Kids a link to help you read more about it here. To sum it up it’s air that goes up her nose making Bella sound like fran dresser a famous actress known for her hypersnale new york accent.
Bella does not sound hypersnale unless I point it out to you and you really have to listen to her to pick up the turbalance. Bella had evulation for speech theraphy before she was 5 years old as a women living with 22q myself I knew what to look out for and what to test. Bella speech journey started at a hospital in grand rapids and then after that we were refered to even more specialist and one after the next it involved weekly treatment visits. A lot of work with announcing words coorectly and with proper speech drs who understood and knew what we were up against with having a genetic disorder we showed Bella a few tricks to look in the mirror and practice saying words that came out the mouth instead of up and out her nose. Bella is 11 now it was not a easy journey and nothing has been handed to us. I had worked really hard at learning all I could and connecting networking with specialist in the field asking them questions as well which lead us to where we are at now attending u of m clinic once a year with Bella being almost 12 now I am at the point where we either do the surgery or we do not do the surgery so for all of these years I was telling them look we need to take tonsils and adnoids out now we are being told that’s about all Bella will need is tonsils and adnoids out. What about the adnoids and tonsils helping to prevent the major amount of air going up her nose.
We have been going to the U of M clinic since she was 7 or so and every year we debate on if she needs it or not based off the scores and cut off points. One time Bella didn’t even have a score for hypersnale the next Bella had a score and we even had a surgery date set. I can only assume our prayers have worked and helped baffle doctors and medical professionals. I posted a video of her talking about it and her hypersnale experience.
check it out over on our youtube and if you like it please subscribe we are trying to gain subscribers and are so close to 200 subs
Happy first day back to school everyone.
Bella had such a fun relaxing summer she is a tad annoyed that it is over but glad that the first day of school is warm and sun was shining bright. When I took this photo it was just before the sun was fully up. We wake up around 5:30 am. I did her hair the night before isn't it cute there is a super cute braid in the back. Here in Michigan it is going to be 88 degrees so we decided to keep her first day of back to school look simple and easy. The lunch bag is one of the wins I just won in a sweep contest it's a cooler bag which I love it will keep Bella's lunch nice and cold which is a good thing it will be 88 degrees later on. The school supplies are just the general school supplies we didn't have to go all out as we had most of the stuff already for her.
What Bella is wearing. The top Go Blue (Yay Michigan) the pants are justice and the shoes are new balance with her foot inserts see post about those here https://www.mommiesquietplace.com/isabellasjourney/2018/4/21/shoe-inserts-called-chipmuncks
and the glasses are Nike from last year (before their crazy pr issues) see trending topics on Twitter about that. For Bella's hair we just did a simple cute braid in the back. and a bit of lip gloss to prevent dry lips and help with a boost of self confidence.
The Go blue top is from the gift shop at the c.s motts children's hospital where we visit at least once or twice a year. Our most recent visit went well and we go back again in Nov for Bella's sleep study . This will help decided if we are going to finally go a head and take adenoids and tonsils out as we don't think Bella needs to have the vpi surgery. She is doing so well with her scores and no one really notices her speech differences unless I point it out. She still has body temp regulator issues and doing well as long as we keep on top of it all.
I have her appointments set up already back to back on Tuesday so she returns to school Tuesday afternoons except for this first week of school we are keeping it super simple and I plan no appointments. We did pretty well with them this summer. Bella graduated out of Ot and speech. Now all we have is psychology for the adhd panic anxiety treatment and working on coping skills for organizing at school and leg pains. Then she has pt which help with the leg pains. The fitbit on her wrist helps us track her sleep steps and calories burn so we can stay on top of how she is physically doing sometimes it's easier to tell by looking at the fitbit dashboard then looking into the reactions she has and play the guessing game. We have a case manager in the doctors office who is helping with her care as well now which takes a bit of a load of from my plate.
I am so looking forward to this year. It is Bella's last year in elementary school and she get's to sit on the back of the bus.
My big girl is all grown up! She is the last Ripsam kid in school her siblings all 3 have graduated high school and it's just her left. I'm so proud of how far she has come
School ended for Bella June 8 it is now June 25 almost an entire month has gone by we have enjoyed many lazy summer days. I post on Instagram a few things we do such as going to a habatchi grill https://www.instagram.com/p/BjvZkJIhkZr/?taken-by=amandaripsam
I have not updated a life update because the only new thing around here has been Adam new job. It has been a perfect fit job he is an It administrator. here is a post of photos he sent of his desk at work. For fathers day we all got him something to put on his desk at work. https://www.instagram.com/p/BkLHE9eBWKu/?taken-by=amandaripsam
Bella has been enjoying her new sandels we picked up from Amazon and you can see those here as Bella trys to ride her bike and get's frustrated because the training wheels are gone.
This week is going to be dr appointment filled at the end of the month to make sure we don't have to do these appointments during school. By September the goal is to be finished with drs appointments. Today Bella sees the psychologist she has been seeing weekly for anxiety and ADHD treatments. Bella has had homework and hasn't done it yet. We are working with a few different programs. One is mindfulness the other is coping cat system it helps her stop and think about her actions and how the other person is feeling. This visit Bella wants to talk about her trip to the U of M C.S Mott children craniofacial clinic.
Bella knows what is going to happen I have talked about it with her and she has some concerns. Bella has some air going up her nose when she speaks and this surgery will help correct that but we need to do a ton of test and make sure we are set for surgery as last time we went surgery was set and plan but we had to cancel it as her test a camera up the nose pretty much to sum it up and keep it simple terms tested her at zero percent hypersnale. So now we are going back to have it looked at one more time to determine if this is a surgery we need to be doing.
you can see and hear Bella talk here on our Youtube channel don't forget to thumbs up it and subscribe to let us know you view it and we can give you a shutout.
so as I was saying this time when we go to u of m which is Tuesday We have a hotel Book so we are spending the night and using medicaid transportation as Adam has just started this new job and taking a few days wouldn't look great on his end so we are going to have a mother daughter night. I am going to attempt to make it as fun as I can.
I have a few plans for her while we are there as long as the weather corp orates the backup plan is to order food in and have a netflix marathon. Please Michigan weather be kind to us. Bella and I have to be up and out the door by 6 am as that's when medicaid transportation will arrive. We also have a shuttle from hospital to hotel and then from the hotel to home we have medicade transportation taking us back. This is why I am a stay at home mom if I had to work full time I couldn't get Bella the top care she needs and make sure she get's the treatments completed. During the school year Bella completed speech therapy and she completed occupational therapy as well as moved from leg braces at night to orthotic inserts in her shoes see our post about her chickmunck shoe inserts.
read about Bella missing so much school here and how we kept up her grades Bella passed 4th grade with a C and dose not have to do summer school even with 46 absents total between illness and dr visit a rare genetic disorder and cerebral palsy leg spasms https://www.mommiesquietplace.com/isabellasjourney/bella-graduates-ot-completed-speech-all-while-missing-25-day
It was not a easy year for sure at one point I even hid in the bathroom closet with a glass of wine because being put in the middle of all of it and having to juggle it all while hubby works was a challenge that made me even want to cry. I had been extra concern this winter was harsh when she got the flu and every one kept passing the flu back and forth then Bella had potassium scare and fevers and throwing up though it. Once a week Bella had the school call me for a migraine or panic issue when it came to correcting her homework.
Now that summer here Bella is more confident and back to herself cherry and happy. It almost makes me wish I could home school her but to be honest Bella is so much a social butterfly that homeschooling would not be good to her already damage ego. Over the school year Bella had to miss out on some fun things to catch up on her school work for missing the appointments. Bella earned top earner for hoops for heart and missed the fun assembly for the rewards the kids earned because Bella ended up having a 5th grader jump on her back and left her with a goose egg on her spine and her having cp that flair up a spasm almost nightly for a week which made her miss school because she was in that much back pain. It's finally all Better and we just deal with leg cramping and spastic pains still. I use backflen and a combo of massages that I learned to rub out the knots I order lotions and things like heating pads and rice pads to help give her some pain relief. We attempted a tens unit but Bella's sensory issues couldn't deal with that.
Bella has become a huge fan of Amazon wish list you can see here
it is a combo of my wish list and Bella's wish list but Bella likes to play on her kindle and add things to the cart
I earn gift cards online sometimes that go towards Amazon gift cards Bella loves hearing go a head order something off your wish list. I don't mind because we use Amazon smile and all part of the proceeds go to Amazon smile which if you sign up for has a link that the 22q foundation uses.
over all I have to say summer is going well. I have been working on projects around my apartment we have been having fun and relaxing except for this week
This wee we have like I mention above Psychology in the afternoon, tomorrow at 6 am we leave for a over night stay at c.s motts children's hospital then we come home Wednesday. Thursday we have nothing but I will have to catch up on house work that day Friday we have Bella's 11 year check up she will need vaccinations which she does okay with but these are boaster shots and she not going to be to fond of me by Friday. I will try my best and usually I reward her with a McDonald lunch.
I look forward to July and Aug of not having to deal with school routines. I have yet to really pull together a summer routine we just have been going with the flow both of us are more relax and enjoy fun things we get to do like going out to eat with Adam after work and seeing the movies. Last week we saw incredible 2 I loved it.
Summer movies, trips to the park, library and my attempt at a fun mommy daughter hotel stay I think this is the start of a fun summer.
I hope everyone else is having a great summer
until next time friends choose kindness.
Bella and her dad he is not mention often on my blog but he works very hard to support our family. Adam recently started a position that is not a contract position. We were going from one contract to the next but with him working salaried full time with benefit life is looking up lately. Things are going so well there has not been much to write about.
I suppose I need to brag on the man who lead me to my faith over hours of conversations our friendship blossomed and our relationship has lasted so many ups and downs he puts up with having to takes us places even after he worked hard and jumps right into family life he jokes that all he does is provides a paycheck he so much more to us then just that he our leader and encourages us. Adam accepts us how we are flaws (missing chromosomes and all.)
He is really there in sickness and in health as a husband and I am forever grateful he is apart of my life all of our lives good and difficult times.
I am thankful Bella has a guy who she can look up to and be proud of. I only wish I had half of that growing up .
Fathers day is not easy for me I'm fatherless my father is alive but I am disowned by him. It is difficult not to call him up or to send him a card with fear of him not answering or tossing the card in the trash.
I have my hubby who has always stood by us in sickness and in health. He not only father to Bella but to 3 others and I don't mention the other three on this blog as their request not to be apart of this side of social media but he been their advocate and supporter too.
So to all of the fathers who stand by their kids thank you and happy fathers day.
By Amanda Ripsam
Lessons I learn while training for my second 5k with my 11 year old daughter.
I'm once again signed up as a community runner and decided to train along with Bella. All season we kept competing over who has more miles in the week. You might have seen a work out post here or there. See photos below of the times I had on the treadmill.
All season I have been running but I can't seem to get past my own mental thoughts of what I should run in 1 mile. I have it in my mind I should run 1 mile in 10 minutes. I run 1 mile in 20 minutes. I'm grateful I am able to run a few years ago I was not even able to walk down my drive way. I had gasteroparies diagnoses and it's been a tough journey for me. Bella signed up for girls on the run last year and I did do that race with her but it took me forever to finish the race. I didn't train and thought I could skip the couch to 5k part.
This year I have trained but I fear the heat might get the better of me it supposed to be hot sunny around 75 to 80. I have to keep in mind I have come so far along and I love running with my kido. Only I hope I can keep up with the kido this year. Last year she ran so far past me and finished 40 minutes ahead of me.
It has been so fun pushing each other and testing our limits and building endurance together. While Adam shakes his head and watches along the side being a big supporter cheering us on and driving us here and there. Picking us up after he gets out of work taking us out to eat as I been to tired to cook a regular meal on the days she runs because those days I have been running too. see the images of my time on the treadmill.
The home work we had to complete at the library and catch up all of her homework while she attended her much needed medical appointment treatment she has every Tuesday.
Bella is so brave, determined and strong willed
I am raising a world changer for sure.
Today is the day the girls on the run race I posted about earlier. The work out post you have seen on my Instagram and all of Bella's laps.
Today is race day. 5k this will be Bella's second 5k race. Leg pains cp spasms, 22q nothing stops her from reaching her goals all the way to the finish It going to be hot so I been awake the past few hours up and down peeing all night.
I had to drink a ton of water to keep up with hydration I am feeling all kinds of emotions so after telling Bella go to Bed earlier she going to need a lot of sleep I can't sleep! I am up writing thinking and pondering how awesome of a daughter I have been blessed with and how lucky I am that God chose me to be her momma.
I am reminded of this scripture from the bible I know in biblical times the races were about going into battle but that's what we do with our kids who have special needs, Not all of us mommas out there can run a 5k race but We are there to battle everything from handling doctors’ visits that keep coming up to dealing with school administrator trying to push their agenda while you compete for your own.
The power struggle of rules and being stuck in the middle. My daughter may never get student of the month because she does not meet standards that she has to be at school every single day to be there to earn it but she earns daughter of the year award she is so filled with endurance, hope and so full of amazing stories and is kind to everyone she meets. The world needs more kindness
Sometimes crying, saying words that are not necessary mean words to get your point across kike when you stub your toes and it really hurts. While having to fight for a right to keep your kid from feeling extra pressure then she needs to is a battle you must pick sometimes and other times we can let things slide, Sometimes we just need to have a good cry in the bathroom closet while your husband hands you a glass of wine and ask if there is anything else he can do to help. There really isn't anything anyone can do to help.
We know what our kids rights are and what they want and desire and we struggle to give them all they want our God is faithful and does the same for us he died for us on that cross and sometimes us moms can feel so worn and beat down emotionally even when times seem so stressful and there is no light at the end of the tunnel there is hope the way I deal is praying and moving on leaving it in God's control.
Isaiah 40:31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Thank you for reading.
My 11 year old has been taking a multi vitamin for as long as I can remember.
The most common reason to suspect 22q11.2DS (chromosome 22q11.2 deletion syndrome; DiGeorge syndrome [DGS]) is a cardiac anomaly, especially a conotruncal one. Neonatal hypocalcemia should also raise suspicion for this syndrome, especially if the hypocalcemia or heart defect is coupled with cleft palate
Even though Bella has hypocalcemia we tested her thyroid and she has a fully functional thyroid and no thyroid issues. I also do not have thyroid issues but we both had issues with hypocalcemia
My father and three half paternal sibling had issues with hypocalcemia as well. I had major issues with hypocalcemia while I was pregnant with Bella my levels dropped as low as 3. I had tremors and I would faint at some points I even turned bluish around my lips and my hands would cramp up so bad. Bella as a developing fetus was pulling the calcium from me while she was developing in the fetus stages. I should have been treated earlier at the first stages of my pregnancy I think that would have prevented the symptoms flaring up. Looking back in time. I feel that this experience sharing it might help someone else.
I have a genetic disorder called 22q11.2 deletion Digeorge syndrome as well. I have improved in the hypocalcemia symptoms but had no issues with my thyroid I been tested and everything was normal thyroid related. It was our t cells that was a little low but other then that we had improved and have no signs of hypocalcemia now.
I do have to watch for when Bella fully enters puberty we are just at the beginning stages and we will need to go back and see the Endocrinologist we took Bella to when she was much younger. That is going to be a visit we will do this summer. In order to stay on top of the syndrome it is important to know what to look out for and manage it one symptom at a time.
My daughter has a genetic condition called 22q11.2 deletion syndrome and hypocalcemia is not something that vitamin or amount of calcium enriched foods can help with but the added D vitamin does help absorb it.
When Bella was younger at birth young we had to give Bella a vitamin called Calcitriol which can treat low calcium and psoriasis. Bella was also put on a liquid iron called Fer In Sol which treated a low levels of ferrous sulfate. Ferrous sulfate is the storage of iron and when low causes leg cramps and sleep issues and a few other issues like passing out and all kinds of issues that you have to stay on top of. As long as these two are manage and treated both Bella and I do great. There are moments like when we develop a temp where we have to test the levels but that's basically how we have had to have our treatmetns done. We have not had to have a transfusion we are one of the lucky few. I think if I didn't know what to look out for that may be a possiablity we might have had to face. Passing out spells and seizure types and mental health kind of issues flair up when these two levels are at a danger zone low. I am not a doctor I'm not even a nurse I'm sharing this because I am refective upon Bella and how she is 11 now. A lot of the parents I mentor have have asked what helped us the most and I think this honestly has helped the most this manage level and treatment for the issues associated to hypocalcemia and having an open mind and not being so closed off and hushed about what we were experiencing I think helped. People have a stigma on us Adult who have 22q not understanding what it is truly like to live with it. Knowing my child will grow up to be a beautiful productive adult one day is my number one goal. Healthy happy children is what we all wish for and for the most part Bella and I are happy and healthy considering we could have been born with a much worst condition. We could be wheelchair bound, no eyes to see one another, no ears to hear each other we could have had heart issues but we had only the hypocalcemia and although sometimes the low level spells can be scary we can see hear and run up to each other for a hug after words and for that I am forever grateful we have 22q deletion
The treatment for this is a liquid calcium supplement that helped with the turning blue and purple it helped with the cramping of the hands and feet she had it basically saved her life having treatment for hypocalciuma. I am so glad that now all we have to use is a multi vitamin and that's because her iron does tend to get a little low. what 11 year old likes green leafy veggies?
I have had to get creative in iron and calcium sources we add to her diet but over all she is doing amazing. We do only yearly blood labs for calcium levels when she was younger we had to take her in to Helen devos in Grand Rapids Michigan every single week sometimes twice a week to poke the poor kid with a needle to draw her blood. Now she is 11 she walks into the lab smiles and says poke me with a butterfly needle looks away and takes a deep breath and sighs when it's all done. Bella say's she is a pro at blood work. I reflect back to the days of having to convince her to come out form behind the tables with bribery of snacks or toys to get her to get her blood work done. Now we walk in and walk out within minutes and not a tear in sight.
Bella has her 11 year check up and I'm reflective of all of the ups and downs we have had. A mom on facebook asked about hypocalcium and such but I thought I would share our personal experiences with hypocalciuma. When Bella was younger much younger and her calcium doped she would turn blue and tremmer with staring off into space spells. I'm so thankful we had the knowledge that I have 22q11.2 deletion Digeorge that I knew exactly what to expect and look out for. When Bella was born I urged the doctors to run the fish test and calcium draw. It's standard treatment for those of us who have this disorder but so many go years with out even knowing and then develop a ton of other issues mentally that could be prevented and avoided if treatment was started at birth
I'm grateful for our experiences and our journey although it hasn't always been easy we sure have come a long way.
I would love to hear about your experience with hypocalciuma in the comments below
Thanks so much for reading
have you had your poke yet?
Bella says thank you everyone for the Birthday wishes. She said go check out our Youtube channel. Bella has been busy with running for girls on the run every Monday and Wednesday and on Tuesday we have her doctors visits,
Psychology, ot and pt. We are taking a pt break until the summer because in Pt we do pool therapy and that's a lot of physical work for her legs. Running keeps Bella's legs active and strong so her legs do not have that many spams. The leg spams still happen even on a mild mussel relaxer but we have come so far along with treatment.
This year was surly the hardest when the winter time was here with the flu we had in Michigan Bella kept picking it up every time she would get better and we sent her to school. Now things are good and all set she been doing so well. Studying for the state test at school that dreaded M step test. We have a trip to u of m booked for another nasametry and a scope. We are still trying to decided if surgery is a option we want to consider for physical over cosmetics appearances.
Bella has hypersnale speech vpi for short is what we call it
here is a link that shares a bit more about what it is it is apart of her having 22q11.2 deletion syndrome.
This is her major issue other then the leg spams from the cerebral palsy issues it effects her legs and we do treatment every Tuesday with the help of Ot pt and psychology and we will start up with pain management soon.
The speech issues we are addressing with the craniofacial clinic at u of m we will have another test done in June to scope and nasmetry and compare last years results to this years to help to see if fat graphing an surgical option for Bella. I at this point have no desire to inject fat only to have to re do it in a few years later after it stretches.
I am hoping for a different alternative to fat graphing but Bella does not need the full repair. At this point I am thinking we might just wait it out until she is an adult but then the issue is adults get stuck with crappy insurance after they do not quality for medicade after 19 years old. I'm considering all options and keeping an open mind and seeing what the experts have to say.
here is an article I found about vpi hypersnality like what Bella has https://www.childrenshospital.vanderbilt.org/services.php?mid=7279
Yesterday Bella hit a huge milestone. Bella turned 11 years old. yay!
I have an author page where I shared Bella's baby photos and if you are no on there you are missing out on some great updates.
I have been focused on this that and everything else my poor blog as become dusty.
Knowledge and awareness is out there being the person to say I did it while that's more then out there. Research about 22q and adults that needs to be the forefront of minds of the researchers.
here is link to the foundations website where I shared our story years ago
https://www.youtube.com/watch?v=qCa7GJ6yVFI Here is Bella eating her birthday treat at AppleBees
Here is a sneak peak at my photo portfolio I have been working on my hobby's one is Photography
Also I have been asked where my friends can send Bella cards in the mail shoot me an email at firstname.lastname@example.org
Bella wanted to share that she been wearing her Inserts for a while now and they are Chickmuncks. They look like they are apart of her shoe and no one needs to know she is wearing them.
Bella had to break them in for the first few days but she is doing amazing and the inserts are helping her walk better. Bella insert help her with her running wearing her inserts has helped with her running as there is less impact when she lands on her feet the inserts absorb the sock form the feet hitting the ground when she runs. I have noticed how proud and tall she is walking around in them a big change over something so tiny I guess that's why they call them chickmuncks. As you can see from the picture when the inserts are in you can not notice a thing different about Bella or her shoes.
Children's special health covers one pair but the cost for these are inexpensive I found a pair online here https://cascadedafo.com/products/chipmunk
The shoes we buy for Bella we get at a place locally called little chicks that link is here.
https://www.facebook.com/LittleChickShoeShopInc/ here is their Facebook page I was not able to find their website.
Bella needs a high arch shoe and the New balance line is perfect for her feet issues. Since we invested in a great pair of shoes and the inserts there has been a lot less ankle feet pain. The Physical therapist we took Bella too a few years ago suggested that we shop at little chicks and now we never buy her shoes any where else.
The price is a bit more then what we would pay for a 10 year olds shoes because she out grows them so fast but the store gives a year warrenty on wear and tear I love their customer service small store so they provide a lot of one on one they are there to help pick out the perfect pair of shoes for your child in your budget. New balance are a bit higher end in the price range but a quality shoe makes all the difference. I buy two pairs of shoes for her at a time. They even put in regular inserts but because Bella now has these Afo inserts we dont need to use the older pair. When Bella was younger Bella had to wear leg braces and over time she has grown has done a ton of Ot and Pt and is doing so much better with treatment than with out treatment. The only problem is we have to miss school one day a week in order to attend these visits for treatment. It has been a struggle staying on top of home work but we have manage to do okay and in the end her physical health has been improving. Bella still has some leg pains but over time and as we continue to do Ot and Pt things are working out for Bella really well with backflen being a huge help for night time leg pains Bella used to wake up crying and screaming in pain. Sometimes she still does but with some lotion and rubbing the knots out has helped. Bella wanted to do a video for you guys of us working the knots out but I don't know how well I can hold a camera and rub her knots in her legs out.
I wanted to share because leg pains and 22q is common among some of the kids I mentor and and a few parents online have wanted to know what we do for Bella and her leg pains. Bella leg pains are caused from a mild form of Cp you can learn about cp here on this website.
Bella has a mild form of spastic cp that effects her lower legs.
on top of the cp she has 22q11.2 deletion syndrome. DiGeorge syndrome and a few other health issues that go along with having a piece of genetic material missing
to learn what 22q is check out the 22q foundation webpage were we have been featured on a few dozen times.
We are always willing to talk open about any issues and answer any questions you may have.
Thank you for reading and letting Bella share the inserts she has she has a desire to help other kids like I do who have 22q together we are getting the word out one page view at a time
until next time friends be kind to each other always
Happy Saint Patrick Day everyone
It feels like it has been ages since I wrote an actual blog post.
If you been following along on social media we were sick all of us for Dec, Jan and Feb we had so many missed days of school.
Bella had more doctors visits then I ever care for her to have and and even ordered Bella's orthopedic shoe inserts.
These doctors appointments are what keeps her doing as well as she has no matter how much you can say you know what 22q is if you don't attend these appointments take a child to as many doctors as we do I mean she has one doctor for every body part and as much as I wish I was exaggerating I am not when I say from head to toe Bella has a specialist.
when you are missing pieces of your Dna you have to stay on top of it all and it's not easy. Sometimes it is a full time job. The paperwork the back and forth to doctors. Trying to figure out meals and plan family events is not as simple as not having these doctor visits. keeping her grades up is not easy it takes an entire team.
I personally thank everyone who goes out of their way to help Bella and has Bella's best interests both physically and emotionally as those are the areas she struggles in not just educationally.
Lot's of aqua therapy, Physical therapy, Psychology and we are starting up with Occupational therapy. All of this at a rehab hospital and all of this in the mix of Bella getting the flu or picking up something this winter each and every time I got her better it seems as though she would look at another sick kid at school and pick something else up. It was never ending.
We raised $605 for the American Heart Association with the help of some of my friends and our supporters online. Which I want to say that Bella class is top earners and they earned a Wii party. I only wish we had a few more supporters locally.
With family scattered between mine in Toronto and Adam's family in fl we are doing this on our own for the most part and with out respite or an aid. We have a few church friends we can call on and I am forever greatful for that and their friendships.
Girls on the run has started back up and we both are training for a 5k race you might have seen my awful times I posted on Instagram.
I just want to get back into shape tone up drop a few pounds and complete the 5k with out coming in almost dead last.
Last year we did the race I came in so far behind infact Bella was done 30 minutes a head of me. That's how slow I was at running. I more like jogged and walked the 5k.
This year I want to be just a little faster. I am using my fitbit and logging in my food tracking my sleep and eating habits. Adam has even joined in on the diet plan he has to watch his calories and loose weight too. All this while Bella has to some how gain weight. She eats and burns off her calories fast like a runner.
Even while Bella has struggles with leg pains from the cerebral Palsy and the other issues we are dealing with that come with the 22q we are moving along forward with treatments.
Bella struggles with loud sounds and the stress of school has started to weigh in on her trying to catch up with school work because we have to attend these appointments every Tuesday which we have been doing since September. With her illness she manage to have 25 extra absences but a doctors note and managing to some how keep sanity.
We wanted to update everyone along the way but there was not enough hours in a day.
As you might have seen on Instagram we have a new couch and I finally got a dslr Camera Feb 10 was my birthday and Feb 23 was our 13 year anniversary of the day Adam and I fist met.
As a thank you to all of you who supported Bella in her Hoops for heart we made a Happy Saint Patrick's Day Video see video here . https://youtu.be/iRcCXNGbdDY
For dinner we are making corn beef and cabbage.
I will leave you guys with my favorite Saint Patrick's day quote.
“Christ beside me, Christ before me, Christ behind me, Christ within me, Christ beneath me, Christ above me.” -St. Patrick
what have you been up to? What is your favorite Saint Patricks Day quote?
Bella has asked family, friends and strangers to donate to the cause hoops for heart. Its a program that takes place at school that raises money for the American Heart Association. It teaches school aged children how to keep fit and healthy, all while having fun and raising vital funds for heart disease research and education.
Over the past 4 years Bella has raised all of her donations online. Bella has yet to meet the 10 donor goal. Bella is excited every time someone donates she jumps up and down and does a happy dance and ask who donated. Every single day Bella kept asking me to post online and see if any more of my friends on Facebook donated. Bella said there is over 2,000 friends on your list and only 5 donated what's wrong mom?
I felt for her so I am writing to ask family friends and yes even strangers if they can donate any amount to help Bella out.
Bella dreams big and has her eyes set on the $1,000 dollar donation because she knows that will make a huge impact and help others out who have the same genetic disorder she has. Bella has been okay with only a mild heart murmer and a few other health issues not heart related but so many of our 22q friends and family have CHD congenital heart defects some even have to have open heart surgery's if you don't know what 22q deletion is I share about our journey with it here on my website. You can also Google 22q and search for it too learn more
. Bella beat her last years amount $150 and has raised $235.00 this year with some of your help Bella needs everyone to pitch in and help her get to top earner and reach her dream goal of earning $1,000.
here is Bella's direct link where you too can donate.
#chdawareness #22qawareness #girlbossmoments #fundraising #scaresquad #hearthero #donorschoose #lifestyleblogger #life #kids #hoopsforheart #americanheartassociation #goals Thank you for donating to the American Heart Association. With your life-saving donation, we can build healthier lives, free of cardiovascular disease and stroke.
You're Supporting Heart-Healthy Lives
Thank you for making a donation on behalf of Isabella Ripsam. You're helping me get one step closer to my goal of $1,000.00.
Bella is in so much pain she was crying and screaming. I had to put her in the tub and use Epson salts. Then I rubbed her legs with bengay cream and worked out her spasms
we see the pain specialist on the 23 and she has pool therapy again so that will help give us more of a direction to go then what we are currently doing. I am hoping that we will adjust and we can get a med added or her current med which is Backflen at a low dose.
We kept her active but with all the cold weather she had to stay inside a lot and has not had a lot of changes to run and get out and play so the one day she was able to go outside it was 3 degrees now it is 20 I thought it would be a good idea to let her go outside burn her energy off and work her legs. The specialist say that her legs being active will help so that's what I was hoping. That is now what happen tonight. Not at all.
Today she went sledding with her friends and came in and she was super sore all the climbing up and down the hills and running around in the snow in her boots. Her boots are insulated with the memory foam and high arch support water proof all that jazz. she has excellent snow gear coat, mittens, scarf, hat and gloves and is bundled up like a cute Eskimo she was super excited in a good mood. Bella has mention leg pains over the weekend and during the week a few times from when she got home from school but nothing like this. Bella was moody and her legs were so sore she cried so hard. I felt so helpless. I'm not sure how my husband feels about any of this but we went to dinner to help her relax get her mind off it for a bit which it did and then we went to Wallgreens to pick up her adhd medication and some more bengay cream and epson salts for a nice bubble bath with the leg and back rub to follow. See this is the only treatment plan we have been given to by doctors so far.
The thing that sucks is...
I have to keep her home tomorrow there is no way she will cope at school with how much pain she is in. She finally fell a sleep next to me watching Netflix with me on my laptop. Bella begged to stay home with how much she hurt and yes she missed school but those are for her medical appoitments just for treatment of her leg pains that I am talking about right here in this blog post. I wish I had a magic wand and could take away her leg pains. I wish I had the answers and I wish when I bring this up with others that I didn't hear do megasium or this or blah that I mean she is ten don't you think we have done it all been there done that by now. Even iron tablets and such oh and my favorite have her just drink water before bed. Really these are cp spasms they are not going to go away with a pill or a little leg rub. I would love to be able to prevent the pain or at the very least have something we can give her at her age that will work well to help her. What ever it is I am doing so far it is helping but it is not taking it away and making her better. Bella even started to ask about what it is that makes her a little different from some of the other kids in her class. Bella said last week she was tired of being clumbsy.
Don't get me wrong we have a ton of good moments but these leg pains have been here since she was born they have led up some times and some nights there is no pain but latley her leg pains have been a level ten with the weather changes from extreme cold of 3 to tonight temp of 20.
Having cerebral palsy and 22q is not easy for anyone and I can't imagine all Bella thinks about all of it Having the pressure to keep up with her school work and doing these appointments poor kido just went outside to do typical fun kid things in the snow and was in so much pain.
It took a bubble bath (thank you mr bubbles) it also took epson salts dr teal is the best, it took bengay cream which smells they gotta fix that so kidos who need it can use it with out saying pew it stinks like peppermint. I had a heading pad and blankets on her legs for weight and lots' of snuggling and Netflix. 10 pm and she is sound a sleep.
I am looking very much forward to her appointment on the 23 with the pain doctor and her pool therapy session these much needed medical appointments help her way more then anything else ever could. I am hopeful this post can help others who are going though the same things at night time. kudos to all the other moms and dads and parent figures who are up at night with kids with sever leg pains weather it's from cp (cerebral Palsy leg spams) or 22q issues or in Bella case both. The 22q will always amplfy anything else.
until next time friends have a blessed night sleep and may you find comfort in the fact you are not alone and not everything is all sun shine and roses in the Ripsam house hold.
This is our truth the good bad and the painful
tell me what's your truth? Do you deal with leg pains too ?
https://www.youtube.com/watch?v=VN0fgHEianY&t=93s Story time My daughter and I have 22q11.2 deletion syndrome
https://www.youtube.com/watch?v=B9kQzktsMRo&t=4s Our visit to the U of M Crainofacial clinic
https://www.youtube.com/watch?v=XmMMy-K0HH4 A vlogging experience and Bella
Bella has 22q and hypersnality and vpi I suggest you check out this link if you want to learn more about it https://www.apraxia-kids.org/library/velopharyngeal-insufficiency-vpi-and-apraxia/
have Bellas very last speech session today
Bella has 22q11 deletion syndrome, VCFS Velocardiofacial syndrome. She has a language delay due to VPI and VCFS itself. We attend weekly speech therapy since she was 2. Bella also has Adhd so sticking with what is needed and keeping on track with the speech exercises is a little over whelming to her and we have to keep on a routine.
I have been blessed enough to find a team locally that can get Bella help she needs for all of her issues and we can set appointments up for all on the same day so she can attend class in the am and then we go to her appointments in the pm. Except for when there is a ton of snow or it is raining really bad and we can't walk to and from school she stays home on those days and just does her appointments and not go to school in the am.
Bella is finally done with speech meaning we have done all we could and are considering surgery to do some fat graphing for repairs but we are also considering not having it done until she is much older. We have some more appointments such as psychology and physical therapy weekly and she is main streem with an Iep and is doing rather well and is beating all the odds. I also have 22q deletion syndrome. We wanted to share our good news.
Bellas last speech session ever! Our Biggest challenge is keeping up on all of the school that Bella has missed such as in class assignments and helping modify assignments for her. Bella works extra hard and sometimes has issues with the teachers at her school not understanding what makes her so different in needing extra support services as she appears like any other child. These appointments is how we mange all of her multiple health issues and stay on top of all of it. Working with the Iep team took a lot for them to get to an understanding but we are moving forward and she is maintaining her grade level and is passing.
I wanted to take the time to thank everyone for all of the support we have gotten on our Youtube channel
here is two more bonus videos
One is an amazing shoutout video done by 10 other youtubers another is a youtube cast sharing about what we do on our channel
https://www.youtube.com/watch?v=14cekwcP2ck&t=73s Tazwhole's Tubecast w/ Mommies Quiet Place
https://www.youtube.com/watch?v=48TZFgVLNUs&t=5s Mr teebees shoutouts and our youtube friends say a special thanks for Bella inspiring them so much
22q11.2 deletion Bella Ripsam videos our journey with 22q
Do you often go to doctor visits with your children? Do you do more then one doctor visit at a time to make sure your kid is not missing out on so much school? Do you like watching cute kids share their stories on YouTube? If so you are going to love Bella's vblog series.
Bella shares what we do at her doctor visits and she shares what she feels and thinks in recaps after each visit.
We have been attending Speech, Psychology and Physical Therapy appointments every Tuesday for Bella.
The speech was to help with the programmatic language and language processing disorder she has I am happy to report Bella no longer needs speech therapy and we are just monitoring her with consult at school
The psychology appointments we are using coping cat skills and stop and think lessons for Bella. Bella has both physical and emotional Adhd on top of Anxiety we have been very successful in behavior modifications with breath and relax at bed time as well as ticket reward system for positive behavior reinforcement I have a reward bucket filled with goodies from the dollar tree, and other stores clearance section filled with goodies she can cash in tickets for prizes. Bed time has no longer been a power struggle or a fight and she is sleeping a lot better. When Bella sleeps better she is able to handle herself better and does better in school. .
Physical therapy is where we struggle we are trying so hard to reduce Bella leg pains we are even going from leg braces at night to ankle braces I am in the process of getting those appointments set up. Bella is getting great at coping with the pains at night and we use some tricks lotions, massages, and heating pad but Bella also has a mild form of cerebral palsy which cause her legs to spasm at night so she is taking a med to help with that. I am careful what I say about this stuff because I would hate for others to do what we are doing with what works for us because 22q treatments are tailored to each person individually no two people with it have it effect them in the same say just like with cerebral palsy you have the extreme forms of cp and then you have the mild forms of cp like what Bella has. In 22q it works much the same way based off how much or how little of a deletion each person with 22q has. A deletion is in her blood you can't tell she has 22q like you can tell with a person who has downs syndrome so Bella sometimes falls though those health care cracks. Bella does not have autism or bipolar or skito like traits neither do I. We both have 22q and it effects us both very different ways .I wanted to create this video blog series to share what life is like for us now that Bella is 10 and is in pre puberty.
By the way puberty in girls sucks the pre teen drama can end any day now. The power struggle is real sometimes. You can't see that in the videos or on my post but trust me they happen and that's partly why we also deal with her anxiety issues and such in the way we do so she has coping skills as most kids don't know what a coping skill is neither do some adults.
I rambled on enough but I wanted to dust my blog off and say thank you to everyone who has signed up and subscribed and supported us over the years. Don't forget to check out the videos below and subscribe to our Youtube channel.
May everyone have a blessed holiday and remember we have more struggles with health challenges and I want to encourage all of you out there raising your own 22q people to be mindful relax and rest during this holiday season between the holiday invites and dont feel like you have to say yes to every invite. You have different needs then those who don't and making sure everything is perfect like us moms love to do for our kids is going to make us batty crazy. Enjoy putting up the tree we are doing ours this weekend as we had so many appointments during the week I am playing catch up on house work and laundry. Pause and focus on spending time with each other rather and remember the reason for the season
Stay warm and blessed my friends and enjoy the videos below
https://www.youtube.com/watch?v=nBLFw32hS38 Vblog number 1
https://www.youtube.com/watch?v=XmMMy-K0HH4 vblog number 2
https://www.youtube.com/watch?v=cWTk9Z8rOOY vblog number 3
https://www.youtube.com/watch?v=B9kQzktsMRo vblog number 4
https://www.youtube.com/watch?v=YH4TfaV9C2g Our 22q11.2 deletion syndrome awareness video
10 things you need to know about Bella
A class assignment Bella worked on.