Hello Need info

[Momofsix]

Hello I am new here. I posted earlier today but i do not see it anywhere. I will tell you about myself.. I am 40 years old and married 22 years to the most awesome man in my opinion<img src="i/expressions/present.gif" border="0"> We have 3 biological children Miranda age 20 married and only daughter... Joshua and Aaron identical twins just graduated high school will be 18 in July. Michael was adopted 9 years ago at age 18 months he is now 10 and is non verbal.. on the autistic scale still working on his real diagnosis.. Within the next 2-3 weeks (finishing up legal stuff and paper work my 2 cousins, Brandon 13 years old w/CF and Christopher age 9 ... will be coming from Florida to Ohio to live with us and pursuing adoption for them too. <img src="i/expressions/heart.gif" border="0"> I have been researching trying to find out what I can about CF but I would appreciate any info or tips anyone has. I want to do the best for Brandon and make his life enjoyable God knows he deserves better than he has gotten. God Bless you Momofsix

 

[JazzysMom]

Welcome.....you original post is in a really off beat, not often read section of the forum. Glad you resposted here. It sounds like you took on a lot & will keep doing so. Its rather hard to know where to start. Do you know what issues/problems Brandon has dealth with regarding his CF? Bugs/bacteria that he has cultured (if any) meds/hospital admits or lung function? Just to get an idea of what his health has been like. Has he done treatments? If not are you prepared to teach/enforce a 13 year old to do such? Could you give us a bit more about him & his CF (if you know it) & we will work from there. You came to a good place for info tho!

 

[Alyssa]

Welcome to the forum !

Yes, like Melissa said ~ what else can you tell us about Brandon? We'll talk you ear off then

About Michael ~ I too have a child (now 20 years old) who is on the autism spectrum, he was hard to pin point for a diagnosis too! He is in many ways too well functioning to even be "high functioning autistic" but he doesn't qualify for "asperger's syndrome" because he had language delay as a child ~ but he does have some developmental delay, so we have settled on PDD/NOS and moved on with things. He now attends college and is doing great!

 

[anonymous]

Hello thanks for the response!!! I do know that Brandon has to take enzymes to help digest his food and he is a very picky eater... He at one time was on breathing treatments but he told me about a month ago he is no longer on them.. He has meds inn the morning and at night but the foster dad talks in circles and I don't understand I remember when he was smaller and he was in ohio with family they would take their fist and beat around on his chest... said they had too. I will keep in touch for sure I will need support..

Alyssa as for Micheal he has been diagnosed with microchephaly (smallness of the head) We don't see it though and he is too high functioning and social to be autistic they say however he has alot of the other symptoms which he is on meds for I don't know what is worse all the meds or the behaviors we endure.... He is ten but as strong as a 30 year old man when angry very painful... take care

Laura

 

[JazzysMom]

Laura....I definitely would get in contact with the closest CF center near you. It sounds like he needs a new evaluation. The picking eating might be related to his poor health &/or belly aches if the enzymes arent working properly. He might also need some type of antacid which is common among us. The "beating" is called CPT=Chest Physical Therapy. You have a few ways to do this. One is manual where you position for hands a certain way & clap (hit without slapping) his torso in different areas. There is the vest which inflates like a blood pressure cuff & vibrates at different speeds. There are a few other devices, but given that you dont know his true compliance I dont recommend the others at this point. The breathing treatments are not being done, but I question if the doctor said they are not needed or if Brandon or a foster parent decided not to bother. Most CFers need some type of breathing treatment to keep the airways open & help moisten/loosen the mucous to allow for easier coughing up. Like I said earlier in this post. It sounds like you might want to kind of erase what he has/hasnt done in the past. Get him to a center near you & start fresh with lab work, xrays, pfts (lung funciton test) etc. Then have a new treatment plan & meds implemented.

 

[anonymous]

Momofsix-

You sound like a wonderful couple to take on all these kids. The world definetly needs more of you!! I agree with the gal above - When you get Brandon take him to a CF center and get re evaluted. Start over and make sure you understand as much about CF as possible. He is at a hard age - teen! My son is 9 and sometimes wants to get out of treatments. Keep us posted and good luck!!

 

[Momofsix]

Hello
I sure will get Brandon re examined so we know what WE need to do for him.... Thank you all so much I am glad I found you. Both Brandon and Christopher have had a crazy life I am hoping and praying they have a good one with us God Bless <img src="i/expressions/heart.gif" border="0"> Momofsix

 

[Alyssa]

Glad to hear you will get a fresh start with an evaluation for him ~ I too think it would be a very wise idea.

About the previous parents or foster parent who "used their fist" to pound on him.... CPT is commonly called "pounding" by us... (we all know what we mean by that) but it is done with a cupped (open) hand, definitely NOT a fist. I really hope nobody did CPT on him with a closed, hard fist ~ not only would it not have been effective, but it would also probably hurt! Poor guy!

How soon will he be arriving and how soon can you get him into a CF center?

 

[Momofsix]

Hello Alyssa,
Well we were hoping for everything to get done by the end of the month, but tonight they are in the path of Hurricane Alberto! Say a prayer for them, poor guys are getting so depressed. As for the fist thing it was his crazy mother she isn't the brightest crayon in the box I think she was trying to pretend to be mom of the year to impress everyone knowing we knew nothing of CF. Both boy's fathers are in and out of prison and want nothing to do with them. The papers should be on their way to final place of approval TAMPA. Reading some of the post I feel overwhelmed but I will get it soon after all it isn't like I haven't been to a million doctors with my Michael. There is suppose to be an awesome CF department at Childrens hopsital in Columbus about 1 1/2 hours away. I will do some more research on it too Talk soon. Laura<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

We are near Cleveland. The clinic here at Rainbows Babies University Hospital is great.

YOu are on a great board and everyone here is supportive and helpful. As you get settled in we'll be happy to answer any questions as they come.

Warmly,
Jody
Julia 6 w/out CF
Ben 2 w/CF

 

[Momofsix]

Thanks for the tip.
I have never heard of Rainbow Babies University Hospital. I will be checking it out. cleveland is about 3 hours from me but there isnt any where to far if it means means comfort and enjoyable life as well as can be for my kids . I didn't mention that my 3 biological kids are all had problems in the beginning and spent the first months of their lives in NICU in Childrens in Dayton Praise God for the most part they are healthy and living a good life. Thanks to all of you I am sure Brandon and I will get lots of help and support here!

 

[anonymous]

My son who is 3 1/2 is seen here at Columbus Children's CF clinic and I can personally say that I have been extremely happy with the care he receives here. We actually have a clinic appointment this Thursday. If you need any information regarding the clinic here I am happy to help you. There is another mom who chats here also that has her daughter seen at Columbus Children's, her daughter is older than my son. I'm sure both of us would be more than willing to answer any questions you might have.

I also am an adoptions social worker here in Columbus, just some additional information that I'd thought I'd share!! Congratulations on becoming a mom all over again!!!!

Mom to 3 1/2 yr old son w/cf

 

[Jem]

What a loving home you must have. I wish you well with the adoption procedure and I think Christopher & Brandon will do exceptionally well with you and your husband and with the commitment your family is willing to make in opening up their hearts to these boys. Certainly Brandon will be much healthier than he otherwise would have been without you and your sincere interest in wanting to make a difference in these boys' lives. I will keep you in my prayers. Keep us updated on how things are going for you all.<img src="i/expressions/heart.gif" border="0">