Ryan's surgery done!

I thought again I followed up to say we are home and he is making progress. We are thankful that his tummy is accepting the formula most of the time. Thank you for continued prayers. I need to follow up with a few pictures!

Oh my! My poor guy is full of meds! We have created our little charts to give meds, order forms to keep track of when they've been ordered, and his own shelves in the fridge! We are looking at buying a small fridge to put in his room just for his meds,and feeding supplies. He's his own walking little pharmacy! What's sad is he's starting to be able to name each one of them, yes good for him. But sad for me, it is the reality of what is with having a special needs child.

This is just the morning routine for his meds. He gets afternoon and night time meds. Soon to add tube feeds to the routine.

Playing games

I love that Ryan still plays board games with me. We play Candy Land, UNO,War,Go Fish,Operation.

I never thought that he would ever beating Mom at games. We thrive on the competition. 

UNO is his favorite game,he likes to win that game. When his grandparents come for a visit he is in heaven they love to play all day long.

 I love playing UNO!

Swimming lessons for free!

Well today Ryan had swimming lessons. We only have 1 more to go. I found these lessons from "Little Mermaid school" They were free lessons. We got 8 free lessons,we only miss 1 week when he was sick.We need a house with a pool!!!!

Dubowitz Syndrome

Dubowitz syndrome is a rare genetic disorder characterized by microcephaly, growth retardation and a characteristic facial appearance (small, round, triangular shaped with a pointed, receding chin, a broad, wide-tipped nose, and wide-set eyes with drooping eyelids.) Symptoms vary among patients, but other characteristics include a soft, high pitched voice; partial webbing of fingers and toes; palate deformations; genital abnormalities; eczema; hyperactivity; preference for concrete thinking over abstract; language difficulties and aversion to crowds.^[1] The pathogenesis of the disease is yet to be identified and no medical tests can definitively diagnose the disease.^[2] The main method of diagnosis is through identification of facial phenotype. Since it was first described in 1965 by English physician Victor Dubowitz, over 140 cases have been reported worldwide. A majority of cases have been reported from the United States, Germany and Russia, and it appears to affect all ethnicities and genders equally.^[1]

^{Here is what a cute boy looks like with Dubowitz Syndrome!!! The most sweetest boy you will ever know!!!}

What a crazy day!!

The day started out just like any other day,very crazy. I got Ryan up at 8am then we proceed with his vest,breathing treatments. Then onto meds and breakfast. Well he had sausage biscuits and fruit. Very shortly after he ate he threw up all over the place,so we changed him got him dressed again. Then onto taking Dad his lunch that he requested . Onto doctor 1 appointment, then to pick up Amber,take her to her appointment.I got my TB test today have to have it read on Friday.We took Amber and "thing" home. I treated Ryan and Megan to Burger King for some lunch! Off to doctors appointment number 2. Home by 2:45 for the wheelchair guy to come and take Ryan's measurements for a new custom wheelchair.

 I have supper to do still, and all of Ryan's breathing and vest treatments and shower before he watches "Big Brother" on TV.

I didn't get all the things done in the day I needed so I must do more tomorrow.

Technology free times

I am trying to work on having no computer times. I want to lots more hands on crafts and fun with Ryan. BUT he isn't having any of it.
How do I get Ryan to have some times were we are having fun with out technology?
He is autistic and change isn't what he likes at all.
I like the pecs system, it teaches what comes next with cards. Maybe we can use this some how to get Ryan to change from the T.V and computer for some fun craft time.

This is what I see him doing most of the day! He is so CUTE!!!!!

Build a bear

 Doug and I found this cool outfit for Ryan's bear.It is a doctors outfit green scrubs. Then we found another outfit for the day Ryan gets out of the hospital. Ryan does not know about the clothes.

It is funny I think this is cute we will need a small drawer for "Lightnings"clothes.
I asked everyone for some new clothes for a surgery gift for Ryan.So hopefully people will get cothes. then we can change them every day just like Ryan does.
I have to pack a special bag for"Lightning" when we go on our Make-a-Wish trip.

Her is Ryan's "Lightning"!

Here is the new clothes we bought!!!!

Double life:)

Double life - we live in the medical special needs world with a son whose needs require meticulous care and attention. AND we live in the "normal" world with Nikki,Amber,Billy,and Megan trying to give them every opportunity.It is hard to be all that you need to be.AND be husband and wife!

 : Being a mom - as some point in being a mom you realize that your life becomes nothing about YOUR life but about taking EVERYONE else around you...taking care of your self quickly gets put to the bottom of the list. Being a mom is such a joy, loving your children and husband is precious, so most of the time you gladly put everyone else's needs first...but man it can be exhausting.
I am the one to go to the appointments, handle the insurance, medications, supplies, etc.  Which is totally fine but it has its moments of feeling isolated and too much pressure of being the only one "qualified" to make decisions regarding Ryan's care.

I CAN do this it just need to be my way and everyone needs to conform to that way;that way we are all on the same page.

I MISS THESE DAYS!!!!

Still feeling sick!

Well we are still recovering from MOST of the house being sick. Ryan is still recovering and the we realize that he has a lump on his side. So we race him to "All Children's"  to find out it is norm for him. It is cellulite's an inflammation in the skin.  Not his first time getting this he has had it a few times.

Today we went to see his regular doctor. She was concerned about the red spot on his leg. She said don't be to concerned that Ryan might have to go back to the hospital. REALLY?? We knew that and we have expected that. Ryan is running a low grade fever none stop.

Feeding tube,getting ready for it.

I dreaded, I mean dreaded, hated, loathed, the idea of Ryan getting a feeding tube.  It felt like we were crossing over into a deeper, more special needs category, that I was not ready to handle...thinking,

We talked with a few of Ryan's doctors and meet with the surgeon.  Ryan was then scheduled for his first feeding tube surgery the same time he gets twisted bowel surgery done.



As time passed I realized the benefits that do come along with a feeding tube:

• Very important:  These kids handle so much just getting through the day.  They need all their strength, which is what food helps provide.
• All of the health problems that come with lack of nutrition can potentially be diminished with the help of a feeding tube. 
• You know the calories/intake.  No more force feeding (or adding those calorie booster ingredients) just to make sure they get some nutrition.
• They can still enjoy food even on the feeding tube.  Nutrition from the feeding tube.  Everything else by mouth is a bonus!  Eating does not have to be a battle.  They can learn to enjoy it.  Eating can be delightful when someone is not stressed out and forcing a spoon in your mouth.
• Hydrated, flushing fluids right into the tube. 
• Medications!  This is an ultimate bonus in our house. 
• Peace of mind, as a parent you know that your child is getting nutrition. 

Happy Birthday Mom

Today was my 39th birthday! I had a great day . Nikki and Megan made me a cake(Chocolate). Doug and Billy made my favorite supper (Brown rice ,with steak).
Amber came over to visit for a while.

I got so many nice gifts

NO Sleep yet!

Ryan is still sick, he is still running a fever,coughing eating very little food but still eating.I don't think Ryan slept much last night.Which means I didn't sleep all that much.We're going to use some of our respite hours and hire a respite worker.Right now trying to keep his  O2 level up and keep doing his vest and breathing treatments.His reflux is just so bad, we were hoping we can keep him hydrated enough so we don't have see the hospital just yet.

I think most of the house has had this sickness, in some form. I have been using the Lysol and trying to get people healthy again.

I need to cal CMS to check on how my gigantic list of supplies for Ryan is coming along. I hope to get his pull-ups very soon I am almost out of them.

I enjoyed going to Girl Scouts tonight we had a good time. I am so glad I pushed Megan in to scouts.
She is learning alot.

I'm hoping and praying for a good night's sleep for Ryan and me tonight and for him to wake up with smiles tomorrow! I'm SO ready for some good days!!! Thank you for keeping our precious family in your prayers!

Surgery NEWS!

Today we found out Ryan's surgery will be August 15 Th. WOW it is getting so real that we have to have another surgery.

I need to start getting his bag and our bags ready.I need to make a list of the things he needs in his bag.

 I need to list the things I know I need. Because I will be going back and forth from home to the hospital.I have nurses assistant program that I will taking as well.I need to buy a new suit case for us to pack our clothes in.I need to get snacks and drinks because the last surgery was so expensive for that stuff.

This is the set I am looking at for me to buy. This set is a t Target for $39.95.


I know we have  things to do as well. prep the house and food for this up coming event.


Ryan's needs
1. two new pair of PJ's (shorts)
2.I will need to take a bottle of melatonin, a bottle of Flax oil.
3. His UNO cards
4. A big bag of M&M's
5. New slippers
6. New lavender body wash
7. new tooth paste

I will be adding to the list as I think of things.

Well today is the very first blog.



 First Ryan woke up with a 103 temp. That is bad for him.Dr Mom gave him some Motrin, then up a cold wash cloth on his head. Then about 10am I gave him some Tylenol. By 11am his fever was gone and he has eaten...I would like to get his wall shelves up and get a side table for him. He has the hospital bed now, we just need a side table.













I went to Walmart to get a few things ; orange juice,ginger ale,gator aid.