Making money blogging and summer fun

Bella did great with the 11 year check up and shots. She didn't cry she hold my hand and breath out the pain and fear of the poke like a champ. 64 pounds and 4 foot 7.

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We now have a case manager who is helping with setting up appointments to try and make her absences 50% less then she had this school year.

I am also getting an advocate to help with the transition from 5th grade to middle school for this up coming school year. Our goal is to not have any appointments for for Bella school to call on Thursdays saying she has a temp and is having panic attacks. She been doing amazing this summer not one temp or panic attack. She gent's some cousin time we are having a sleep over with her cousin and they are currently watching 101 dalmatians on Netflix.

Last summer so so crazy and busy I couldn't even keep up with my apartment this summer we have been working on organization and minimizing .

Today Adam and Bella worked on Bin storage system and setting up her bedroom to be more organized and donated a ton of toys. I have to say this summer is going so great I even have time to work on writing my book. I had some ladies at a conference I usually attend pray for me to find time to write and I have so much time I don't know what to do with. I'm excited to see where this summer will take us.

Yesterday we had a tour of Adam new work a full time non contract position which a lot of you had prayed for him to find the right fit job. This job is so perfectly fit for him and the people he works with are great and he has his very own office with a nice kitchen to keep his food from home we can make him healthy meals for work and he is an It administration. All good things come. As all good things come to an end sometimes we no longer are income eligible for ssi. My goal with my website make some money to make up the difference or at least cover the cost of what I pay to keep the website going.  I have a few places where we signed up for our blog to be sponsored and I look forward to working with some Amazing brands. I have a few book launches I am apart of and I can not wait to have my very own book launch team. I have to finish my book first. I have 1st part done the hard part where I talk about my past. The second part is my healing process I'm struggling writing it down but glad to do so. It is very therapeutic for me.

Thanks so much for reading my blog and watching it grow into this beautiful website I couldn't have done it with out all of you supporting me/us.

Here is to new adventures and remember choose kindness.

 

Why does Bella needs all of her appointments every single Tuesday?

Update: it has been ages since I did a life update

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Tuesday are our days we take Bella to physical therapy and psychology.  We sometimes also see other specialist on the same day. Last month we ordered Bella's shoe inserts they are called chipmunks they are a plastic insert we put into her shoes and she wears them all the time. This is part of the treatment for Bella's leg pains that come from having a mild form of Cerebral Palsy. cp for short. Bella has digeorge 22q11.2 deletion syndrome and this is just one of the many ways we keep her as active and healthy as she appears.  Spring break we will pick up Bell's shoe inserts and she is excited about them for now. They stay in her shoes like dr scholls inserts. Her shoes have high arch and are new balance with insert put in. Bella loves running and is excited girls on the run has started up again. 22 laps around the gym every Monday and Wednesday. 

we had Bella's occupational therapy assessment and we have great news.... Bella does not need occupational therapy.  The other stuff will come once we are better able to handle her adhd both emotional and physical adhd and panic attacks a lot better. Bella does get tired more and she is on a mussel relaxer for the leg spasms at night.  We are to continue with physical therapy as that seems to be helping Bella so much with her leg pains from the mild cerebral palsy spasms.

For the psychology part of her appointments seems our girl is having panic attacks the joys of entering puberty and works herself up into a temp of 99.9. right down to tummy feeling sick and while everything her mamma has syncope.

  Seems on Fridays the school calls us and Bella has migraines and no one can tell what is causing them. Bella says the loud kids and sounds in her class but they are no different any other time of the week. I think it is something else all together. We will get down to it and figure it out even if I have to order a smiley face button spy cam to get to whats distressing her. 

Bella needs more self esteem building because she has been told how much she can not achieve at school vs what she can achieve at school. There is also a tight group of girls that Bella is not apart of. She is friends with two other kids who refuse to take part in the clicks which I am so proud of her for standing up for herself. There was a few things that come up where she was picked on by some other kids who claim they were just playing a little game with her but that worked it self out. Bella also does not like how loud the bus becomes. Kids in her classroom seem to be a little to loud for her to handle. We also have some issues where we have taken her to busy restaurant or concerts and the loud sounds bother her there too.

 

Other then the typical day to day stuff of routines and normal structure there has not been much to blog about in terms of updating friends. I did get a new couch and a dslr cannon camera that I am loving. I will have a gallery of my photos soon for all of you to check out

Thank you to everyone who has asked how Bella has been doing and wondering where my updates have gone. Over time Bella updates have been less and less and we are moving forward in the right directions in all areas of Bella's life creating that balance I have longed for since she was little.

oh and we are also getting a dog :) I will share photos of our new friend once we get him home. he is a rescue dog from the animal shelter. I can not wait to share him with all of you and introduce you to our new pet. The godlfish are still alive and going strong. I never realized how long gold fish live when you actually take care of them. The goldfish have been with us for the past 3 years.

 

How to handle doctors visits with special needs kids like a boss! or our trip to U of M

 Hello everyone,

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I am going to dive right into this one as I am excited to share the news.

 The reason for the doctors visit is Bella has 80% hypers-nasal speech means when she speaks air goes up her nose is what the test showed at the last doctors visit.  

In Aug, in fact, we were scheduled to go ahead and correct this issue she has with air by fat graphing which involves fat from some part of Bella (I wasn't sure where they were going to find any fat on her)  I was wondering if we should wait it out until she passes puberty or just go ahead and do it now and get it over with.

The speech doctor at the clinic had to perform her speech test on Bella by asking Bella to say funny sounding sentences. Bella had to say words while pinching her nose, followed by the breath o her breathing on(magic mirror thing a ma jigger) I am not sure what it was called but it goes under Bellas' nose and you can tell if there is air in the mirror if it clouds up or not. Bella had no air on the mirror this time.  Last time the mirror was all cloudy.

Bella then had to sit with a fun looking space helmet on her head and speak into a sensor while she said the same funny worded sentences. Bella scored a perfect normal on the test. 4 times. Normal from 80% is something only short of a Miracle.

I don't even think it sunk in yet. Bella was thrilled and thankful that Bella did not have to have a camera go down her nose into the back of her throat.   It was a shock to both of us no surgery needed  Bella will go back for a team visit soon as they can fit us in to talk to the team about our next treatment plans.

Below is some info on what Velopharyngeal or for short Vpi is

 

 

 

 

 

Bella playing in the play area on the 8th floor after to burn off her energy before we headed home

 

I know I asked all of you to visit my website to hear about this trip because it is such great news it was difficult to talk to 100 different people and I can not keep up with that many questions. If you do have any questions feel free to leave a comment on the blog in the comment section below. 

Thank you for reading. Bella looks forward to seeing your likes, comments, and shares and she said she is super excited she does not have to have surgery.  Bella is a 10-year-old girl with 22q and cerebral palsy. I am a mom who also has 22q. This is our journey and I am sharing to help others out there not feel so alone.   Don't forget if you like it subscribe (Purple button top right of the homepage)

Until next time take one second at a time.

 

Waiting while trembling in Doctors offices and operating rooms.

Fear Fighting by Kelly Balarie. is a book that I am on part of a book launch team. I have really enjoyed reading a book I can relate to.  I deiced to edit a blog post I had all ready had up and wanted to add a few touches too since reading this book. There is a chapter that really hit home for me and reminded me of this blog post I wrote. The chapter is called waiting well. You can find the book here“Fear Fighting.” Link back to www.fearfightingbook.com and www.purposefulfaith.com

One of the most fearful moments in life is getting a medical diagnoses you don't fully understand how it will effect you or a love one.

Most of my life I would pray to God for patience and in praying God given me many lessons in patience. Like waiting in line at the coffee shops, banks and the most difficult wait was waiting for my my immigration papers I will blog about that at a later date. I found a moment that we can almost all relate to which is waiting in a hospital waiting area. There is a room where we wait. A room where a lot of people pray and ask for others to pray with them.

Thisweek is no different Friday I will be waiting for Bella to come out of dental surgery. I will wait for her and pray for her once more and hope all goes smoothly. I will wait it out once again and be tested on my faith and my patience level as my husband and I have to get up at 4 am and get her to the hospital at 6 am for a 7 am surgery.

 

. The surgery was 3 hours long. Bella had two teeth pulled. . Bella has a few fillings and a crown on her teeth. Bella had a rough time getting the sedation medication out of her system but we pulled through it. I won't lie it was not easy. Last night she was up all night from 2 am until 5 am asking for ok more like screaming and demanding to watch Netflix. She needed her sleep she was hungry and then she got off the sedation medication and had a meltdown after the meds were wearing out. It was a rough night for us. Truth serum is in that sedation I swear it was so hard to hear all of her struggles and be powerless to help other than what we were already doing. No parent likes to see their kid in pain. We had lots of tears and sobs but we worked it out. She is eating soft foods and does not like things blended up one bit. She should be able to eat back to normal in a day or so. Just gotta make it through tomorrow. Monday she goes back to school and she should be good to go she did not like missing school Friday at all because the kids had a snow day the day before. Hopeful that tomorrow will be a fresh start and we can go back to normal routines.

 

I know a lot of you want to know how this was all covered insurance stuff was covered under her medicade and children special health. Adam has a fsa card from where he works so that paid for the deposit on the room at the hospital. We had issues with Bella's prescribed floried toothpaste getting covered but we are working on trying to get that covered. The dental work and the paper work was easy.  Bella saw her regular doctor before we went to the hospital to clear her for surgery. Bella has a small heart murmer but it is the kind not to be concerned about.

Here is Bella pictures from dental surgery she has such a pretty perfect smile so if you wanna bat a eye at me and judge me for saying no to your lollipops and sugary stuff go a head I dare you! I have spent so much time effot and money on making sure she has great teeth. Teeth is one of those issues that is common amonth children wtih 22q. I was born with to many teeth in my mouth and have issues now as a adult with my teeth that is not something I have to let me daugheter go though.  I don't feel bad for offending anyone who offers her hard candy or sticky sugary stuff and saying no thank you. There are so many sugar free healthy options we have found that she loves instead any how and perfers.

. Has your kid or kids had to have major dental work where they had to be on the sedation medications? Comment below if you want to share about your personal experiences with dental stuff.

I really should start giving guided tours or have my own room with a name plate or something by now. I have been in and out of hospitals so often I know the ins and outs, from filling out forms, talking to hospital social workers to knowing the medical terminology like a dr to get the insurance to do the billing correctly. Only I don't have a phd. I have had to be resourceful and mindful though it all. I also have had to find my own way with faith and as I think about this Friday and how simple of a task this time around is with dental surgery I remember it wasn't always so simple and planned out. I have a routine for hospital trips, busy bags and the works. I can teach seminars to parents about what to do and not do while waiting for the dr to call your name and see your child in the recovery room.

There was a point in time when I didn't wait well at hospital visits. I want to share a post I wrote a while back about the first time my outlook changed towards these multiple trips and visits to different hospitals and doctors.

 

 

The day my perspective change on mine and my daughter's genetic disorder called 22q11.2 deletion syndrome.

 

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One day sitting on a hospital bed next to my daughter as she was hooked up to wires for her video eeg for the fifth or sixth time to discover the cause of her seizures. I found myself in the poor me, whose is me self-pity stage.The why me lord was a question I asked often I was full of anger and didn't like this disorder but then I figured that anger was the stage before acceptance. Anger has a place and while waiting for the anger to fade into hopefulness I learned that acceptance is the stage after moving out of hopelessness into hopeful days for the future.

Waiting well is not always easy.

My daughter scheduled for another overnight video eeg.

The study prior to this video eeg the doctors had her sleep deprived for 24 hours. This time sleep deprivation was 48 hours although my husband told me go ahead rest my guilt of passing on the disorder ate away at my internal core.

I was sleep deprived for a week and finally started to feel the effects.. Why me? Why us? I felt like I couldn’t handle it much longer watching my daughter cooped up in a hospital room during the day with wires her head and body covered her every moved watched. In hopes she has a seizure which of course never happens during controlled environments at a hospital.

Sitting in the hospital bed I wept while Bella was finally able to sleep.

I had child life come in to relieve me so I could refuel on more caffeine.

My husband was working at the time and I had walked down the hall to compose myself…

As I walked to the family lounge in the pediatric ward I met another mother who had a child in the cancer ward.

The children cancer ward a place I was grateful my daughter was not in.

It could be worst it will get better I now tell myself. My moment of hopelessness washed away.

Sitting in that room with pity for myself while this mom is going back to her child who is also hooked up to wires but her child is fighting for life and hooked up breathing tubes. Her child was in a ward that is isolated.

I went to thank the mom but I couldn’t get past the doors to the cancer ward.

The locked doors separated the video eeg unit because the cancer wards are locked off meaning I could not get back there unless I was family.

I looked inside the ward and saw tiny children with bald heads rolling down the hallways in wheelchairs. The children I saw were younger then my daughter who was four at the time and the hopeless went to hopeful after I cried tears of thankfulness. I went from hopeless to hopeful in that moment.

It could be worst and it will get better is what I learned from my daughter video eeg that day. My situation didn’t change but my perspective has.

Have you ever been in a situation similar to mine where things seem easier with a different outlook on it? I would love to hear about your personal experience in the comments below.

Thank you for reading. #Fearfighting.

For more of my stories and writing of what life is like living with a rare disorder 22q11 check out www.mommiesquietplace.com