Andie & The Puppy

 Aine had a writing project for class.  She learned about writing from a fabulous writer who visits the kids school every year.  This is what she came up with....  ENJOY!!!  :)

    Andie came home from school and found a letter from her mom telling her to get eggs from the grocery store before her dad got home.  She was ANGRY because she had a lot of homework to do.   She got a bog from her room to put the eggs in.  Since Andie has her drivers license and car she was able to go to the grocery store listening to her music loudly which made her want to dance.

    On her way home she got a letter from her dad telling her they were out of pancake mix so she needed to pick some up.    Andie LOVES pancakes so she was excited to hear this news.  She happily returned to the grocery store.

    On the way to the store Andie saw her friends at the park.  She was sad because she wanted to play but couldn't stop because her dad was going to get home early.  She Did however stop at the crosswalk to let the chickens cross the road!!

    While Andie was at the grocery store ANOTHER message came from her brother because he ran out of shoes Again!  The only thing she could say was "COME ON!"

    She went to Kohl's to pick up shoes and stop at the park on her way home to play.

    During this time; her teacher sent her a note that it is distribution day and she needed to come pick up her work.  She was super excited about this because she was getting books from the library!

    When she returned to her car there was a note from her dad that they need milk and clothes.

    She is getting BORED of all these letters!!!

    But! She goes to Kohl's and then the grocery store and finally home to help make pancakes and do her homework.

    Andie was doing her homework with her headphones on when she heard a scratch at the door.  She was concerned about the sound and decided to check it out.  When she opened the door she saw the cutest little puppy EVER!!

    Andie wanted to keep the puppy because she never had a puppy.  She brought the puppy in to nap under her feet until her mom got home.

    "om, is it OK if I have a puppy?"

    "Yes!" said mom

    "Great! I'm naming her Sophia!"

    Andie was really happy she could keep the puppy and took her to the park to get rid of the puppies energy.  They played catch, swing on the swings, and slid on the slide.

    When they got home it was time for be.  Her mom said the puppy could sleep with her so both Andie and the Puppy put on pajamas and happily went to bed.

GROWTH!!!!

It has been a crazy busy couple of months.

We have taken huge strides with Aine and her health!

We started by traveling to Mayo and discussing her nutrition.  Aine had not grown in the last 5ish years and was starting to lose the muscle mass she worked so hard to get during karate, horseback riding, and dance.  She started to sit during classes and then not want to take classes; which was a red flag in our books. When she stopped flipping her bo staff and chucks and didn’t want to touch her sword I knew that we had to do something.  

An appointment was scheduled and we started our new adventure.   During the first month of our transition Aine was switched to a different food and started to gain weight and get her energy back.  Within two months Aine gained 6 pounds - yes SIX Pounds!! More than she gained in 5 years total!!

We traveled back about a month after the food change and got good reviews from all of her Dr’s    as well as got referred to a bunch more Drs. She was asked to join an aerodigestive clinic to help with her incontinence; swallowing; and respiratory issues.

I’m happy to announce that she has passed her VERY first swallow study.  She has been working hard for 8 years to be able to pass this test and has finally succeeded!!!  Tomorrow; she will go to the surgical suite to verify that there are no issues that need to be addressed prior to allowing her to start with a feeding schedule - whether that be in a feeding clinic or at home.

Her vocal cords seem to be intact and working as they should; but that will also be verified tomorrow.

She is down to one hearing aid and will have further hearing tests once her ears are checked tomorrow.  I’m guessing that they will clean her ears out and if they don’t find ear tubes; possibly put another set in.   Once this is done tomorrow - we will schedule another test to verify the initial hearing test results and do any adjustments to the actual hearing aids at that time.

One side of her nose is inflamed; but no reason “why” has been discussed as they will look at all of this tomorrow.

Pulmonology will also be in the surgical suite tomorrow and they will be looking at her lungs as well as an abnormality that was seen on a previous scope.  They will be looking to see if she has any damage or inflammation from illnesses or structural issues which would cause her to get sick or sound sick (croup type cough and prolonged illnesses).  Our end goal is to keep her healthy and hopefully start going out without her mask!! They will also be helping us set up a new chart to follow should she get ill.

During this time they will also be checking to make sure she isn’t dealing with ulcers and may take biopsies while they are there due to some of the other things Aine is dealing with.

We will not have the results of all the tests for a few weeks as they need to be put together with her previous results which will include the results from the tests that are scheduled to be done in a few weeks. Which will start with a brain and spine MRI; this test possibly holds the answers to many of the questions that we had or have arisen during these last few months.

Moving on from those 3 systems:

Aine’s bone age came back as a 6 year old; so that means that she still has the ability to grow!  She has grown a titch since the food change and she has been ecstatic about picking out new clothes.  She is definitely my daughter when it comes to clothes and shoe shopping!!!

Her right leg is shorter than her left; so she now has a lift in that orthotic.  It absolutely makes a difference as her hips are now level.

She is running and jumping; riding her bike and swinging faster than ever!  She loves to go to the park and throwing toys for her dogs. She just had a dance recital and is ready to start going to karate classes again.  We have her all signed up to start riding her horse again and she wants to take tap class.

The problem we have been running into though is that her knee hurts.  We were able to talk to the Dr’s about it and they did some testing and discovered she has osteopenia.

Definition: Osteopenia is when your bones are weaker than normal but not so far gone that they break easily, which is the hallmark of osteoporosis

During the state fair - Aine broke her leg….  There has not been an official link between the two and we don’t know what the next steps will be; but in August we will be seeing a specialist to discuss the condition further.

It hurts my heart to know her knee hurts so bad; but at least I can explain it to Liam now that is the positive at this time.

There have not been any signs of scoliosis; so that is good, but since she has DiGeorge Syndrome they will continue to monitor her as she gets older (22q11.2 puts kids at risk)

Her shoulders were reviewed and we will be discussing them in more detail after she has her testing tomorrow and the end of June.  This is limiting her mobility and exercise. It is not known at this time if they are higher than they should be or if there is extra stuff in there as there is a possible calcification by her neck as well as by the opposite shoulder.  I’m curious to see what the rest of the tests show about this. She has a webbed neck which limits her mobility some; but we are not planning on addressing the webbing at this time.

She will be checked for Chiari Malformation as well as a tethered cord.  If she presents with either of these; we may have our incontinence reason.   She will also be checked for brain stem damage as well as pituitary growths.   These results will help the Drs determine which path to take to help Aine continue to make leaps forward.

She looks out the side of her eye (turns her head to the right to watch TV)  so she will be having a full eye exam to see what is going on there.

During a future visit a sleep study will also be done to check on her sleep apnea and make sure her Bi-pap settings are correct.

Aine saw the cardiac surgeon and he has ordered some additional testing to see when she will need another heart cath which will help us determine when she will need to have another open heart surgery.   An OHS is absolutely in her future (and sooner in life now that she is growing) but we need to make sure that it happens at the correct time for Aine. Not too early but not on an emergency basis. All the future testing will assist in giving us a timeline.  

There are definitely more positives than negatives and more answers than questions.   

Aine Loves the hospital and all the staff that have worked with her.  She asks all the time when we are going back and we have to count on her calendar the days as they go.

She is stronger than ever and ready to fight the fight she started over 8 years ago.

She is determined to kick the boys butts (Karate tournaments) and going to grow big like her friend Jessie.   She’s going to be a horse mommy and have her bestie train her baby. She has a shoe family right now that is learning to tap and LOVES her new food.  For now Chase (paw patrol stuffed animal) is her baby and he loves to flip and do the long jump.

She can’t wait until she is ready to test for her black belt and has been practicing her spin jump wheel kick.  Did I mention she LOVES her new food??

Thank you for all your prayers and good thoughts!  They mean the world to us.

As always - if you have any questions; please feel free to ask.  Post a question publicly or send us a message.. If you have a question, chances are someone else has the same one.

It has been a crazy couple of months!!

Aine and I traveled to Rochester to meet with some Dr's about her height and weight.  I was a great visit with lots of learning.   Due to this visit we will be returning to Rochester to do an inpatient food change.  On a normal basis I would do the food switch at home, but this time is different; Aine has some values that are extremely low and the food switch could cause Refeeding Syndrome.   This is dangerous so they want to have her under strict supervision during the change over.
Once the switch is done, we will know if she is small stature because of DiGeorge Syndrome, her heart, or the food that she has been on.

Once this is done, Aine will see about her hearing and vision  (we know both are affected, but it is time to get things checked and I'm guessing get new ear molds because hers are the original set).

Liam has successfully earned his Black Belt and Shawn is working towards his!  Aine and I are both purple belts and will be back at training once the weather warms up and her food is switched.

Aine has also started dance class and will have a rehearsal in June.

We are absolutely sick of the weather and want it to warm up (we can deal with the snow - just not the cold)

Time to get treatments going!

Have a great day!!!

We are not sure what has struck the house, but Aine has had an on and off temp for over a week and Liam is now barking like a seal.

We did not end up going to Chicago this year; instead Liam will be getting a new sword.  Shawn and Liam would like to do a team form when they are both Black Belts. 

We had our first visit at Mayo which was a good visit.  We got all of her appointments setup, which we have needed to reschedule two of them already due to illnesses and another will be canceled tomorrow if the kids don't turn the corner :/

Liam is practicing for his youtube channel (he is very hopeful that he will get to start one - we'll let you know if happens.

Aine is practicing hard for her dance recital and anxiously awaiting her costume to arrive.

New Start!!

Well....

 We have finally made the leap of faith, and have started the venture of changing Aine's health care over to Mayo Clinic.  We had our first appointment yesterday which was a get to know you appointment and an appointment to figure out what Dr's she would be seeing there.

We got a very thorough history taken and a team of Dr's was set up and we are verifying the schedule of appointments.

I'm thinking it's going to be a crazy ride the first year; trying to figure out logistics and learning a new facility, but I feel good.  Good about our decision and good about the care that she is going to receive.

Thanks for all your well wishes, thoughts and prayers!!

Merry Christmas & a Happy New Year!!

I hope that your holidays have been wonderful and your new year is starting out well.

The kids have been have a great time with each other and spent most of the break playing with their new toys.

Liam is into Harry Potter and we are currently reading the books.  He was excited to receive some Lego sets from Harry Potter.

Aine is into Lego girls and hatchimals, so she couldn't get enough of her presents :)

Shawn is working towards running another marathon.  It's great to see him excited about running again.

Liam has earned his Black Belt and is working towards his 2nd degree.  He would like to start on the swim team - so we will be looking into that also. 

Aine has continued with Karate and added Dance to her exercise. 

She had 2 heart caths this year, both of which went well (there was a Major bump in the road on the first one, but we will discuss that at a later date).  Another winter without surgery :) :)

Shawn is working towards his Black Belt - he is guessing a years time.

I know that there's more, but I have Fibro brain right now, so I'll write again later!

I'm back in!!!

Hello!

I am so glad to say that I have finally gotten back into this blog! 
I somehow managed to lock myself out!

The kids are doing really well!

Aine just had a heart cath done and we were told that they are going to continue to monitor her so we will have to go back to her cardiologist in 3 months.

3 months ago Aine had an echo that lead us to the cath that was just done.

6 months prior to that Aine had a heart cath to check her pressures and and stints and/or balloon to allow her to go longer without surgery.

There were some complications post-op after recovery prior to discharge so she had to have a bronchial scope with this last procedure.

She is starting 1st grade this year and is pretty excited.  Since she has PID she is home schooled, which has been going really well. 

She competed again last year for Team (karate) and finished the year taking 2nd for her event!

She is now riding a bicycle (with training wheels) and working on her scooter - but that is too tall for her, so we need to find something that will work.

Liam is going to be doing a Lego team competition this year and is working towards his black belt in karate.

He also competed last year during Team and did Excellent.  He will be competing again this year; partially as an advanced brown belt and partially as a black belt.