Well, we bit the bullet.....

[StephiLou]

Haven't really had time to post for awhile. Things have been out of control here. Here is the run down.....

1. DS has been home from the hospital for about 2 weeks. He is scheduled to have his tonsils/adenoids taken out Nov. 3 in Wisconsin. They will keep him for the weekend, due to his breathing issues.

2. While he was in the hospital in Wis., we found out several things...He has a pancreatic divisim. This means that his pancreas grew into 2 seperate lobes that grew around his intestines. His aren't connected on the other side (this is called annular pancreas). Right now, the docs think it would do more harm than good to do any surgery on it to get the intestines out. He has polycystic kidney disease - another genetic disorder. There is realy nothing to be done for this. The prognosis is that he will need kidney transplant in the future - hopefully well into adulthood. They are also 99% sure that he has 2 other genetic disorders, both very rare - one is Common Variable Immunodeficiency Syndrome (CVID) this is also know as "Bubble Boy Syndrome". Treatment for this is usually daily injections of Immune Boosters, but since he has Down Syndrome and that extra chromosome, it won't work (I could explain in more detail, but it is long, complicated, and boring) ;) The other disorder in Dubowitz Syndrome. It has to do with failure to thrive, the pancreas, and the intestines.

The funny thing is, DH and I have had all of these tests. All of these disorders are like Downs, in that they are not really inherited. They are hiccups that happened when DS was conceived! Right now, he is the only prson in the US and Canada with these combinations of genetic disorders. We should have played the lotto that day! :o

The other thing is that several of these (the CVID and thyroid disorder) are immune disorders, but different parts of his immune system are affected. It is really weird.

[StephiLou]

So, we are back home trying to schedule everything around trips to Wisconsin for follow-ups, etc. We also started physical therapy and Occupational Therapy (PT/OT) in Chicago once a week! ::) Long story short, our PT/OT wasn't coming locally, so we have to go to others.

DH starts early Head Start next week, and we have his IEP meeting for the regular school district coming up mid-November.

We get a nurse to start next week, so that I MIGHT be able to sleep in a real bed instead of the recliner that I have been sleeping in DS's room for the past 2 1/2 years. I won't be sleeping for awhile, until I am satisfied with this nurse. I am grateful for the help, but I don't like having somebody in my house. Oh, well. She will only be here from 10 pm to 6 am, and we have been able to get some "nanny cams" That will make me feel a little better.

So, since we didn't have enough going on, we put a bid on a new house tonight! If DS gets a trach put in after this tonsil surgery, he won't be able to come home until I have a house that meets the square footage and electrical requirements. So, we had to find a new place. This is a ranch, 3 br, 1 bath, den, 1800 sq feet. The best thing is the yard! It measures 305 ft by 200! A little under an acre. It is in town, so we can't have animals, but I can put out a garden and fruit trees! The kitchen in this place is miniscule and straight out of the '50's. Complete with boomerang print blue and pink formica with stainless steel trim! and the royal blue and black checkerboard style asbestos tiles on the floor complete the look! ::) This will be fixed - quickly.

Well, I had better get going. I have been able to keep DS on a more normal schedule since we have been back from Wisconsin. He is getting to bed around 10 pm instead of 5 am! I had better get there too, as he wakes up earlier!

I will keep you updated.

Steph

[gypho]

Regardless of what happens...... you were entrusted by a much higher power to care for this person, this son that you love so much......

And even though it's hard..... I know you feel blessed to be loved in return by your son..... what love he must have for you.

How blessed you are to be able to know such love in a single lifetime! Children like this can only be seen as blessings, not burdens..... to think, the Creator saw fit to give him to you!

And prayers will not cease for you all.

gypho

[txanne63]

Steph,

How complicated life can be---But your love has single-handedly waged war on the illness that continue to bombbard you precious son.

All my prayers---and love to you.
So sorry i have been so busy--i have had time to really keep up with all you are going through.

I am there in Spirit tho.


as ever annie

[MNMOM]

I was wondering where you were and how things were going for your little guy.
I hope that everything goes well in the new house and that you will be getting some extra help. I know that you mentioned before that you needed more space for all of the equipment to take care of your son.
I think about your family quite often and hope that things will go well for your little guy and you and your hubby.

[pinetreefarm]

Steph... MNMOM has said it all.

Pine Tree

[StephiLou]

Thanks again! We appreciate the prayers and support so much! :)

We heard from the real estate agent, and we officially got the house!.....Now all we have to do is pay for it ::)

Anybody wanna buy a house? :)

Actually, we have a lot of painting to do in this house. The original owners' son sold it after they died. They built the house in the late 50's early 60's. I think they painted the walls on the inside once!. They are all plaster walls, in VERY good shape, but you can tell that they haven't been painted.....at least in my lifetime. :) We will have to paint the entire house with KILZ and then paint over that before we can take DS in there. The people that lived there chain smoked. There are beautiful hard wood floors through most of the house that had been covered with carpet early on. So they are in just about perfect condition. A good cleaning is all they should need.

We will keep you updated. I think I am going to have to break down and invest in some hair color.....33 is too young to be fully grey! :)

Steph

[MYellowRose]

Steph hair color doesn't really matter, don't you think you've earned all that grey? If you think 33 is early look at the columnist Heloise, she's been grey since somehthing like age 18, now that's what I call young. LOL
I'm so glad you got the house and things are looking up for you.

[Walking_Tall]

Wow, your life is very busy just with caring for your DS. I'm happy that the boy has parents who truly care about the medical and developmental needs. Good for him and good for you ;)

The house you described sounds similar to the one that DW (Julie) and I have been remodeling for the last 5 months so that we can move into it. It was built in 1966 and had gorgeous (spoken tongue in cheek) chocolate brown tile with streaks of orange and white in every room of the house. It had been covered over with carpet that was about 26 years old.

It is a whole new house on the inside --- I laid new ceramic tile in the front entry, kitchen, laundry and bathrooms, laminate flooring in the den and dining area and re-carpeted the rest of the house. Textured the walls in all of the rooms, scraped off the "cottage cheese" from the ceilings and gave them a smooth finish, then trimmed it all out in wide crown moulding. Lots of work, but well worth it.

You mentioned needing to KILZ the walls then paint. You can now buy tinted KILZ in a variety of colors that will eliminate the need to KILZ , then paint. One coat of the tinted KILZ is sufficient to do both steps.

Best wishes to you all, and I'm happy that you all are able to get the new house to raise the boy. Take care.

Jerry