Thursday, December 30, 2010

Winding down from Christmas, ramping up on adoption

We got word yesterday that our homestudy copies should be to us VERY soon...they are complete, and just awaiting signatures and notarization. I am hoping that by the beginning of next week, we can file with USCIS.

I filled out the I800A last night and this morning. Boy, it is much more in depth than the I600A!

Let's get these boys home by the late summer/early fall!

Mary

Thursday, December 23, 2010

The Clearances are IN

YIPEE
Our Ohio state child abuse clearances are here, with all of our names, DOB, and SS#'s correct on them! (Last time, my name was completely wrong, and I had to get them to run it again with the right name)
I emailed our homestudy agency. I hope they did get the other clearances from Nevada and Idaho. There was some mix up there, and the agency felt certain they would have them well before Ohio's come in, so I hope that is the case. If so, we COULD get this out to USCIS next week, as I had originally hoped.

YIPEE

Mary

Wednesday, December 22, 2010

Adoption Update...finally

Jacob has been home for a few days now, has improved greatly in his complaints of stomach pain, and has picked up a cold/cough. Today he felt puny from that, but overall, the change in him is nothing short of miraculous. I hope it holds.

On to the adoption news: We are still in the homestudy update phase. We have had our update interview, have sent off for all of the various clearances necessary and are waiting for those to come back. They are taking a while. We know the state of Ohio takes MONTHS to return the child abuse clearances. I have called and emailed, and I did receive a nice email back from the person who runs the checks, that she will do them this week, and mail them out on Monday. Then the disclaimer...she will let me know if these plans change. So, hopefully, next week, we will have the Ohio clearances.
Nevada and Idaho turn theirs around in 24 hours or less. I wonder why it takes Ohio 2-4 MONTHS to do the same thing??? I know there are more people in Ohio than in Nevada and in Idaho, but come on! The agency has confirmed that they have Nevada's, and a glitch in communication was solved, I faxed our signed and notarized consent for Idaho to run and release these to our agency. So they should be in by sometime next week as well.
Dare I hope that by the end of next week we could have the homestudy in hand and be ready to submit to USCIS by the first week in Jan?

From our home to yours, we wish everyone following along a truly blessed, peaceful, and holy Christmas, celebrating the birth of Our Savior. Merry Christmas!

Monday, December 20, 2010

Home Update

We've been home a few days now, and I'm so happy to report that Jacob seems to be feeling better. In fact, I'd say at least 80% of the complaints have completely disappeared, and of the remaining 20%, most are easily redirect-able, and only one time did he really cry and insist he was in pain. And that was right after he refluxed, so I understand that one!

We are really beginning to address the aggressive behavior, and hope to have that well under control after a couple of weeks of being home with us 100% of the time, and we have everyone reacting the same way to his aggression. I will say that the aggression has dramatically dropped off, too, as I'm sure a big part of that was reacting to pain. We always knew that his aggression skyrocketed when he was in pain.

So, hopefully this new medication will be the one that helps, and we can move on from this episode!

Adoption news: No word on Ohio child abuse clearances, but I called, left a message, and emailed two people for update requests. Let's see if any of those actually produce an answer. I'm not holding my breath. We have pending clearances from other states. I spoke to one person today and she said they faxed the clearances to our homestudy agency. They are refaxing to them. For the other state, I'm waiting on a return phone call. Both of these states (Idaho and Nevada) were VERY speedy last year with the clearances. Ohio is the only slowpoke of those we need. I still hope to maybe be ready to submit to USCIS by the end of the month. Let's hope.

Mary

Friday, December 17, 2010

Jacob Home

We are home. It feels soooooo good.
The scope showed no esophagitis, and mild, diffuse gastritis, improved from last time.
That's great. However, why is he still in so much pain?
That's the question.
We are hoping the additional medication will help, and we will go back to GI in 2=3 weeks. Please pray that this helps and he gets some relief.

Still no word on our child abuse clearances so we can have our homestudy complete.

Mary

Thursday, December 16, 2010

A Plan

We have a plan of sorts....
Tomorrow, they will scope Jacob's esophagus, stomach and duodenum. He has had 3 of these in the past 6 months, but every one has shown gastritis and esophagitis, and he has been in treatment for it for months, so they will look again. Depending on what that shows, we will either stay or go home tomorrow.

They are starting the Bethanecol today, which should help motility in his GI system.

We will see if the protonix helps more with reflux.

And hopefully, tomorrow, we will have more answers.

Mary

Wednesday, December 15, 2010

Wednesday Evening...still at the hospital

Well, we are still here.
I spoke with the Resident, and expressed by "concern" that their thought that Jacob was "experiencing the sensations differently than we do", and had a "hypersensitive" GI tract, was a crock, and we had not really looked for the problem. They have scoped him 3 times in 6 months, each time showing esophagitis and gastritis, and visually diagnosed gastroparesis. I have told them he refluxes, so he has a GERD diagnosis, treated with 4 different acid reflux meds, none of which have worked. Last night, he punched himself over and over, and over in his sleep. This is NOT a "behavior". I know he has some behavior challenges. I have scars all up and down my arms to show his behavior challenges. But, this child is IN PAIN, and we have not done anything to alleviate it. Any one of us with esophagitis and gastritis for 6+ months would be complaining and we don't have hypersensitivity. I told her we either figured something out, or we wanted to be referred for a 2nd opinion somewhere else.

Then, they did their rounds, and I repeated my "concerns" to the entire resident group and the attending. I told them we could at least address the GERD. And, what can be done for the gastroparesis? Turns out there are other things that can be done! Imagine that!

So, they changed his Nexium to Protonix, and added something like Reglan that is not Reglan, to increase gastric motility. They said they would discuss his case in the team meeting at noon, and possibly rescope him. They would let me know.

The nurse this evening said they are planning on an MRI tomorrow. I don't know of what, what they are looking for, but they will discuss this with me on rounds.

At least they are beginning to look.
I hope we get to the bottom of this and we get to go home.
And, we are expecting 5 inches of snow tonight.

Unfortunately, I have no news on the adoption front! I will be posting that AS SOON AS possible!

Mary

Tuesday, December 14, 2010

Tuesday evening from Children's Hospital

we are still here...
The best they have come up with...and all they are doing is literally watching as he eats and recording his pain episodes...functional gastrointestinal disorders. Basically, he hurts and has to learn to live with it.

Guess who is not happy with this?
They have restarted his Carafate, and Periactin, which is supposed to help with "overreactivity". ????

They have had a behaviorist in to watch me feed him lunch twice. Yesterday, he cried through the entire meal, today, same food, he was fine. (they say that also points to what they are saying) Then 45 minutes later, he started fussing, and had a bad afternoon, and a horrible evening. Had to get tylenol twice. He is asleep now, but has not stopped punching himself for the past hour and a half, all in his sleep. (They will say it is another "behavior"....self stimulating) But he is fussing while sleeping too.

I don't know when we are coming home. I do know tomorrow I am going to find a time to let them know that I expect further testing. They proposed, through the behaviorist, that we begin certain behavior modification techniques during meals, record for the next 4 weeks (until his scheduled scope on Jan 12) his pain/wretching responses, then compare this with the information they get when they scope him again. They keep saying he has had "extensive workups"...they have scoped him 3 times, each time with biopsies, found HPlylori the first time, "plain" gastritis and esophagitis the 2nd time, and candida esophagitis and gastritis the third time. They are going to have him on Carafate for a while, again, not on again off again, and expect everything to be ok in January. Ok, then let's look at surrounding structures...pancreas, liver, etc... Let's do some motility studies, we know he has gastroparesis.

I just want my kid to stop being in pain.

Matt Video

Jacob's Hospital Trials

As promised, an update on our 'at home' Jacob's medical/hospital stuff...sent from Cincinnati Children's hospital. Ever since we have had Jacob, a year now, he has had stomach problems.  He eats a pureed/soft diet probably because he was never taught to chew solid foods, but eating seems to hurt him. He complains DAILY, multiple times a day, sometimes surrounding mealtimes, sometimes not, of pain, and has gagging episodes as well. He does not actually throw up, but gags/wretches.

We know he has reflux (because I hear and see it, not because they have done any kind of test to diagnose it) and has been on Prevacid, Prilosec, Zantac, and now is on Nexium. All work (or don't, I should say) about the same. He has been scoped 3 times in the past 6 months. First time, showed H-Pylori, which has been treated and last scope was not present. Also showed some esophagitis...an inflamation in his esophagus...probably from refluxing. Next time, it showed just plain 'gastritis", and some esophagitis, nothing else. They put him on Carafate, which reacts with stomach acid to form a barrier in his stomach and esophagus.  He was not getting better, and I would not agree to the "let's just wait a few more months and see" so they decided to do another study, that required placing a probe during another scope. WHen they did that one, they said he has candida esophagitis, and gastroparesis...his stomach does not empty as quickly as it should. They also said he still has gastritis. Again, Carafate, and meds for the candida (yeast), and wait. I have been calling them back to let them know that he is not healing...he STILL complains, cries, refluxes, and wretches, and if they are expecting after 6+ weeks of treatment that he should be showing signs of improvement, he is not!

This lead them to decide to bring him in the hospital to observe for a couple of days and here we are. They are sending in behavioral med people, to watch me feed him, and really think that this is a "behavior"" (because, you know, it is so common for people to reflux, spit up, scream in pain so bad that they bite holes in their arms...all for 'behavior'...attention getting??? I'm paying 100% attention to him!). Today's theory is that his esophagus and stomach is 'overly sensitive" and the behaviorist will help with decreasing the behavior.

I will try to post tonight about how today goes.
Soon
Tonight.

Mary

Saturday, December 11, 2010

A bit of background info

Well, it looks like I did the first post correctly, so with my new found sense of accomplishment, I will give a bit of background info.

Jim and I have 5 bio kids, the youngest of whom is Matt, age 20, with Down syndrome and autism. When Matt was about 13 years old, we decided we wanted to adopt, and began this crazy journey. In 2004, we adopted Catie and James, a bio sib pair, then ages 14 and almost 7, from Ukraine. Catie is now almost 21 and James is 13. Next, we adopted Joey, then age almost 7, from Ukraine. Joey has Down syndrome.  Then, last year, we adopted Jacob, age 10, from Serbia, who also has Down syndrome. So, at home right now, we have Marie ("She is just "old") Emily, 21, Catie 20,  Matt, 20 (DS) James, 13, Jacob 11,(DS) and Joey, 10 (DS).

And now we are adding 2 more boys, "little boys" to the mix. They are listed on ReecesRainbow as "Jacob" and "Matt", but obviously, we will be changing those names, since we already have a Jacob and a Matt.  "Matt" is right now 6 years old, and probably will be close to 7, if not already 7 by the time we bring him home. "Jacob" is a year younger at 5, and will about 6 when he comes home. They are in different institutions in the same country.

As to where we are in the process: We have had our homestudy update interview, and it is written, waiting for child abuse clearances to come in from 3 states. Then we can send off to USCIS.  This is the first time we have ever adopted from a Hague country, so that process is still very new to us.  We are hoping to travel for the first time in the spring sometime, with the 2nd trip, hopefully before their birthdays in early September.

Tomorrow, our at home Jacob health updates:

Mary

Friday, December 10, 2010

Testing, one, two, three.....

Thanks first of all, to my new friend Amy for helping (read....completely doing with only criticism from me) set up this blog, and for the wonderful support she has given to our adoption. You will not be forgotten!

I hope I am doing this right. I'm brand new to blogging like this. I tend to be technophobic. I caught myself giving the TV remote to our 13 year old because I could not figure out how to make the TV work....very much like my mother did to me about 5 years ago.  But, I told myself that if everyone else could do it, so could I, and with Amy's help, here I am.

Jim and I have another adoption blog that we have kept during our previous adoptions, found at www.martythompson.com.   Look for "stolz adoption" then click on blogs or something like that. I wanted to do a blogger blog though, so here we are for this adoption.

Tomorrow I will post an update about our adoption. But, I guess we are officially off and running.

Mary