Sleep awareness

Sleep Awareness

Having 22q and sleep issues go hand in hand with myself and anyone in my family who also has 22q father siblings my daughter all of us have 22q. Obstrucvie sleep apena is one of the isues alone with weight being an added stress factor that is put on us for sleeping issues. I know when I weight less I sleep more soundly.

Nothing beats a great family hike in the woods fresh air does wonders for sleep and family bonding

Nothing beats a great family hike in the woods fresh air does wonders for sleep and family bonding

I have had struggles with sleeping since Bella was born from having ptsd night mares and flash backs passing out and in and out of hospitals it was never ending for me these sleep issues as a mom it's a struggle to stay a sleep fall asleep and stay a sleep especially with a child who has multiple helath issues.

There is more research being done in the sleep study's that are being done but when we go there isn't many issues and results are typcally the same control enviroment and nothing like getting the correct amount of sleep that you can at home vers a hospital medial lab room.

I opted out of the refearl for sleep study we been there done that got the teeshirt. Low iron was some of the cause but there are other factors. Sleep hygine is important room tidy, no distractions and sounds a sleep routine is a must.

Bella has a sleep routine she sleeps soundly but that was not always the case she used to wake up screaming crying with leg pains. Part of that now that I know is the mild form of cp the leg spams which is different then the cramping from the calcium issues or what ever is common for others with 22q and leg pains and sleep issues.

Sleep is important for your physical and emotional health. It can help you stay healthy and make you feel less stressed. But what should you do when you’ve been trying to doze off for endless hours and nothing is working? Take a deep breath—better sleep is on the way. Making changes to your sleeping area, bedtime routine, and daily activities can help even the worst tossers and turners get some refreshing rest. Here are more expert solutions to help you get some much-needed sleep. Melation 3 mg over the counter it's safe to use and your body naturally produces it. You need to talk with your doctor before getting it for yourself or your child. I'm not a doctor I'm just a mom who has been in the trenches. The sleep battle is real Teas sleepy time tea a soothing sound like brain wave music or a sound machine. We use both meltation and a sound machine Bella has enjoyed crickets sinc she was a baby and she's turning 12 this month so I'm not going to stop that any time soon. We also use a breath and relax app it's preogressive breathing it helps calm the mind down and brings aniexity levels from a 10 to a 6. I use it myself and find I am yawning within 10 minutes. Reading and snuggling with a book 20 minutes before bed. Have a set routine for after school where it's time blocked to get in all of what eneds to happen homework, housework, food, family time, you name it. No food for drinks 1 hour before bed and keep the tv shows light hearted nothing scary.

You may know that sleep is good for you. But did you know that not getting enough sleep is linked with many long-term health problems, including diabetes, obesity, and depression? Sleep helps heal our bodies and minds by allowing time for us to grow and repair cells and form new pathways for learning and remembering. Why is sleep so hard for us to achieve? Things like traveling or too much caffeine can trigger insomnia, though stress and worry can also keep you from resting well. Find out what else gets in the way of sleep and what you can do to help. It’s 3 a.m. and you’re wide awake. Again. What’s the deal? We all experience an occasional toss-and-turn night, but insomnia—not being able to fall or stay asleep—can become frustrating if it occurs often. Before you turn to prescription sleeping pills, check out some of the many things that experts agree can help you sleep better—like following a sleep routine, exercising, limiting caffeine and alcohol too close to bedtime, and getting stress in check with things like yoga or meditation. Here are more tips for improving your sleep. 1 Tips to get your kids to sleep—so you can too showers, bath time, snuggle time, reading a book and I use a breath and relax app 3 minuts of relax breathing and I'm ready to start yawning.

It’s normal for kids to have a hard time falling or staying asleep sometimes. But it can be very frustrating for your child and you—especially if it happens often. There isn’t a cure-all or magic fix but there are things you can do to help you and your children have a better night’s sleep. The key is to find a comforting bedtime routine and consistent bedtimes that work for your child at each stage of development. No matter what the age, we have tips that will help the entire family get some shut-eye. Use this helpful guide to put the sleep disrupters to bed for good

Keep consitent routines, firm strong loving boundaries and remember don't argue fight or bicker before bed Never go to bed angry with your spouce either.

As a recovered insominac those are my tips and tricks. What are your favorite sleep habbits or routines to follow? I want to hear about it in the comments below.

27 anger tools and techniques to help kids with 22q

22q and behavior.

27 anger tools & techniques

I’m giving you a tool kit that Bella learned this week in therapy and passing it on to you.

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I had a friend who made a comment about my post that I shared on Facebook and I loved her reply so much that I had to make a blog post about it and share it with my mommy friends. My friends reply after seeing my post from Bella’s therapist this week. “What if the educational system wasn’t so hung up on grades and funding? what one thing that might help stop so much bullying sometimes I think regular classrooms with regular kids should have this as their regular curriculum. I think it’s coping skills for all of the emotions that get tossed at these kids every day while at school. (AND we ALL need to practice a little more “I feel” in favor to “I hate” …every little bit counts -& with every bit of effort on our part, the Holy Spirit gets a better toe-hold, a better opening to move in …if we allow its guidance to be our persuasion) “ This last part was the reply my friend had. Imagine if we equipped our children with even more tools every little bit we share with them isn’t going to stick and work. Trust me I am the master of trying new products and programs that might work with our child.
From one tantrum to the next tantrum it was overwhelming between her emotions and my own emotions trying to sort out what was really the issue at hand and being more stubborn then she is and not giving into her every wants just because she is having a hard time understanding why we said no to something. Of course therapy was not the only course of treatment we have attempted to read books and follow along programs such as 1,2 3 magic and it worked for a bit then she caught onto my tricks and developed some of her own to get her way. As a mom you discover that upsets your child one minute and one day might not upset your child the next day. This year we are trying love and logic but we combine the two approaches and wow the little bit of difference just giving a child a set of skills that us adults need to remember to use. Natural consequences have seem to be a powerful lesson to get my message across and help her understand why he couldn't’ have or do what and when she wanted. Impulse control from the Adhd was strong with Bella and we still work on calming down methods such as timeouts, we do a trick called blow out the candle where she takes her fingers and blows out a pretend candle and inhale the flowers and she smells the back of her hand.

How often do we say things without thinking about how it can make someone else feel? How often do you think kids do that when we are not around and they are having interactions with other kids on the playground. You know the kind of interactions I am talking about, I don’t want to play with you today I want to play with so and so. Or how about I don’t like your hair you poopy head. I mean kids don’t mean what they say to one another they can be mean one day and their best buddies the next day. Once children start school they are basically people trying to manage in day to day life just like us adults are. The only thing I think I would change is prayer should be the top of this list not the last resort. Once a parents thought process is off a prayer to re center and calm can make all of the difference. If praying remember pray with the right wording and emotions and leave it up to God after that. If prayer isn’t your thing find your mantra or center or whatever it is you need to do to realign your thought process. Giving my daughter a list of coping tools to use when she’s upset instead of just ignoring the behavior has made things go a lot smoother not perfect but easier to manage. There is nothing more important than a relationship between a child and a mother (parent figure) and allowing your child to pull out a coping skill instead of bottling up that anger is only going to make your bond with your child stronger. Teaching your child to pray or meditate is a strong tool to use and help manage their feelings that are hard and overwhelming. I feel that if we teach our children at a young age how to cope with our feelings and frustrations they will be able to handle whatever comes at them with a little bit of self respect and in turn help others with some of the tricks and tools they use. My friends asked about what number 25 was? it’s called move the wall what move the wall means is you push the wall with your hands over your head and legs stretched back out pushing the frustrations away.

So enough talking from me. Now it’s your turn! Practice time: what coping skills or tools do you use when you are angry? what coping skills or tools have you given your children ? What coping skills have your children picked up watching you? How do you plan on correcting your own behavior to allow for them to see a model example.

Leg pains and 22q

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these kids are not all the same in our family our story is different then these typical 22q common leg problems and are not megasium deficiency or calcium cramps in her legs they are leg spasms and tight muscles in her muscles from mild cp complicated birth issues I have 22q as well so that how the cp diagonses and 22q l when I gave birth as I had lots of complications and no support other then my family at the time she was born no one knew how an adult with digeorge would effect a child too. Bella does sleep well now but it used to be nightmare with sleeping low iron and dr just not grasping any of what my having 22q would effect during labor. Bella is taking a medication for the spasms i wont say which med but muscle relaxer at a low dose and has special shoe inserts which help lesson the inmact she also does pt excercises at home and we streach followed with a bath and leg massage with lotions rubbing knots out as I find them in her legs we use heating pads or ice as needed way more good days then pain days but it was with a lot of dr visits missed school time and extea love and support staying active helps and she sleeps soundly especially when she runs outside in the fresh air It taken years to get this far she mostly does a lot of self care on her own now. Just have to stick with consitent routine and structure. Being active is the very best thing to keep leg loose and build endurance With my child it not the common leg pains 3 siblings and my self have 22q we faced a lot of these challanges alone

St Patrick's Day from Bella

Hello everyone

Bella wanted me to share one of our photos we took last St Patrick day

I don’t usually do cute short and sweet posts but I thought I would share an adorable photo of Bella since everyone loves Bella photos over on my fb page

Happy Saint Patty’s day and remember march is Cerebral Palsy awareness month

Bella on top of the 22q has a mild form of lower spastic cp in her legs the color for cp is green as well

Cp dose not stop bella she is signed up for girls on the run and loves running that 5k race this will be her last year in girls on the run as she’s a 5th grader and moving on to middle school next year

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Bella donated 602 dollars this year for the (American Heart Association) #heartwareness (22q google it)

https://www.mommiesquietplace.com

We made it to our first goal which was $100 our next goal is $200

Now that we are at $215 our next goal is $500

would you consider donating any amount to help Bella raise money for the American heart association?

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As you know coming across my blog both Bella and I have 22q112 deletion syndrome which is a total body disorder that affects all of the body functions from head to toes. That there is around 180 different common symptoms. 22q is not curable there is no going out and picking up a new piece of missing chromozone dna however there are treatments and options out there like Speech, Ot, Pt and skills such as coping cat and Dbt therapy’s. Adhd and panic disorders and that goes without saying it also can affect the heart is so many ways. Bella had a small hole in her heart when she was in uturo but when she was born it closed on it’s own. There was extra blood pumping in the lower left ventirical. We now have mild heart murmer that the dr’s

I am open to guest posts we also have a fan page 22qmommiesquietplace If you can't donate please like and share. Encourage someone who can help Bella out. This is her very last year. Bella is a 5th grader.

Bella set the bar high last year earned $600 dollars.

The event is on the 22 of Feb The kids do fun challenges the the class the earns the most wins a banner on their class room door with a pizza party. Bella class is not in first place this year not even in 4th. These kids are going for the big prize wireless headphones that cancel out noise. Bella wants the headphones sure but we own a pair so Bella is just happy with the tee shirt and the keychain which she has earned already. Thanks to 3 donors. :) Bella needs to complate badages though and needs 7 more donors to get the 10 donation badge. If you want to help you can donate as little as $10 that's two cups of coffee.

. I shared a mini blurb about Bella's heart issues when she was in uturo (aka in my stomach) over on Instagram.

incase you missed it Day 14:

I was asked if Bella had any heart issues as both Bella and I have 22q.


Bella in uturo had a hole in her heart lower left ventricle and it some how repaired on it own! (Only God?) science? magic who knows but I sure was thankful.

right as soon as she was born she did turn blue and have to have the calcium treatments because of low calcium from hypercalciema.

Bella now just has a mild heart mummer that we check yearly on. If you remember the last fund raiser it was for the Dog jog at school Bella loves running and seeing those emails that someone donated on your behalf. Bella even checks daily to see who has donated.

Bella does have some extra complications that require a lot of dr visits so I have blogged about her journey on my website faithfully for years. I have switched blog platforms when from a hobby blogger to a writer and speaker. I have won awards for advocating and mentoring other parents with children who have the same disorder Bella and I have. . I did so because I wanted to document all of it but I also wanted to help others out there know that they are not alone like I was when I was first diagnosed.

In the 10 years I have been advocating people have watched us online via videos bella did a mini series about the visits with speech, ot and pt. We also see a team of dr specialist for the calf palate and hypersnality speech with the crainofacial clinic at C.S Motts children’s hospital in Ann Arbor a few times a year. Our next visit there is in Aug as Bella has gotten older the visits are fewer and farther apart .On the outside she has improved to the outside world, Invisiable disablity is a difficult thing to manage. No one get’s it until they get it.

Bella is mainstreem in a regular class room and has accomdiations according to her needs. This year is her last year in elementary school and her last year raising money for the American Heart Association for the kids healthy heart program.

Over the years we get one diagosnes after the next one treatment plan after the next. The dr visits never end and she so far has 20 absences all excused based off these many visits.

Bella also has

Cerebral palsy a mild form of it is the major factor with Bella as well as adhd and mild cognitive delays. adhd both emotional and physical. That's what makes her unique and she has inserts in her shoes.

We don't allow this to stop us from accomplishing all that we have. It's just there and it is what it is. We adapted and have supportive friends and family (mostly) it wasn't always the case.

Last year Bella raised $600 and so far this year she has raised $215

So I have one call to action for this blog post trust me I’m getting to it but wanted to share the life update and our story for those who are new to the blog

I just had my 36 birthday I have 22q as well.Thanks for all the bday wishes we are going out this Saturday to celebrate my bday and Valentines day!

I also have 22q ! with chronic illness of my own I show others what 22q can do infact it inspired a campaign with the 22q foundation.

I was asked what do I want for my birthday and

all I want for my birthday is for Bella to meet her goal which is to raise more then she did last year. $600 so even if we can make it to 601 she would be so thrilled there will be no living with her if we help her reach her goal.

no donation is too small. Consider two cups of coffee $10 from every single one of our readers and friends will add up.

Bella has 5 people donate so far and I am asking for everyone to step up and pitch in.

With a goal of $600 and the next would be $1,000 for the wireless headphones that are noise canceling. Bella sensory issues we use these kind of headphones all the time. Bella wants this pair though. She's so determined she bugs me daily asking if I bugged my friends yet! I slacked big time this year. So to make up for it this long post that my friends can't say they didn't see. :)

Some children with 22q have chd and are not as lucky as Bella was and requires surgery to fix their hearts.

Bella wants to help raise money which goes towards a great cause. She has 5 days to raise $600 we need everyone to help

#charityfundraiser #chdawareness #22qtie #chdawarenessweek #heartwarrior #heartdisease #healthbloggers #congenitalheartweek #kidsheartchallange #chdaware #love

Answering readers questions Velopharyngeal Insufficiency (VPI) and Apraxia

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.

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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

https://www.youtube.com/watch?v=cWTk9Z8rOOY

First day back to school outfit

Hello friends.

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

 

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school has been out and summer fun starts

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

https://www.instagram.com/p/BkTno9ahQPL/?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.

https://www.instagram.com/p/BkaspRShc6U/?taken-by=amandaripsam

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. 

https://www.youtube.com/watch?v=wQvYlejl46Q

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

https://www.mommiesquietplace.com/isabellasjourney/2018/4/21/shoe-inserts-called-chipmuncks

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

https://smile.amazon.com/gp/registry/wishlist/newwl/ref=nav_wishlist_lists_2

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.

 

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Happy Fathers Day-2018

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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.

Endurance building

By Amanda Ripsam

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Lessons I learn while training for my second 5k with my 11 year old daughter.

Building endurance

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.

Training

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.

 

 

How hypocalcemia due to 22q11.2 deletion syndrome effected us

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?

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Cerebral Palsy & 22q11.2 deletion syndrome &

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.

https://www.dystonia.org.uk/dystonic-cerebral-palsy 

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

 

 

 

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Bella inserts Afo she used to have to wear leg braces at night now we have these cool inserts they look a lot like the regular inserts and they match her new balance really nice.  see photo above you can't even tell she has anything in her shoes. These help with impact when she walks has even helped improved her posture. Bella legs still get tired and sore and spasm happen sometime but they have come a long way over the years before where she would wake up crying and screaming in pain

Bella inserts Afo she used to have to wear leg braces at night now we have these cool inserts they look a lot like the regular inserts and they match her new balance really nice.

see photo above you can't even tell she has anything in her shoes. These help with impact when she walks has even helped improved her posture. Bella legs still get tired and sore and spasm happen sometime but they have come a long way over the years before where she would wake up crying and screaming in pain

shoe inserts called Chipmuncks?

Hello everyone

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.

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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.

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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.

http://yourcpf.org/

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.

http://22qfamilyfoundation.org/

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's Day Youtube video.

 

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?

Jump Rope for Heart and Hoops for heart is a fundraising and physical activity program.

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.

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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.

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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.

https://www2.heart.org/site/Donation2?idb=44265695&2530.donation=form1&df_id=2530&FR_ID=3193&mfc_pref=T&PROXY_ID=4442438&PROXY_TYPE=20

 

#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.

22q and leg pains

 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.

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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 ?