Wednesday, July 31, 2013

One month

We just can't believe it has been a whole month already.  A whole month that Joseph has been home with our family.  It's been quite a month.  A lot of wonderful times and a lot of really hard ones as well.

Joseph's digestive issues seem to be more under control right now.  He has a very limited diet, but it seems to have stopped the diarrhea so we're sticking with it for now.

He's doing so well!  He's swimming all around the house on his belly trying to investigate new things.    He can't walk, but he's not letting that stop him from exploring.  He's more interested in different toys than he used to be.  He loves being held and played with.  He had a little bald patch in the front of his head right above his forehead.  At first we thought it was just a weird cow lick and hair just didn't grow there.  But since he's been home, that spot of hair is now growing in!  The only logical thing is that he used to rub that spot on something so often that it caused the hair not to grow.  Probably a stimming behavior because he was left in his crib all day.  It's so nice to see that it's growing in and that he feels comfortable enough that he doesn't need to do that anymore.  He does still grind his teeth, but we've noticed a big decrease in that as well.

He had a swallow study done to make sure that he does swallow properly and he's not aspirating his foods or having any other medical issue with feeding.  He did great, and the speech therapist was very happy to see that we don't have any other bigger feeding issue going on.

We finally had our first speech therapy evaluation and meeting.  It was probably one of the best appointments we've had yet....and we've had many!  God knew I needed some real help that day and it came in the form of a very positive and helpful therapy session and a kind financial advisor from the hospital taking the time to help me figure out what we're going to do about all of Joseph's medical bills.  I'm hoping we're on our way to getting some things resolved.

I got some great feedback on Joseph...he just seems to have very, very low muscle tone in his face and he has no idea what to do with is tongue.  I actually have practical exercises I can work on with him to bring more sensation to his mouth, help him to practice using those muscles in his cheeks and lips as well as learning that his teeth are for biting.  It's exciting to know that he's finally going to have people in his life helping to work on things like eating solid foods, drinking from a cup and eventually working towards communication.  It was just nice to have tangible things to go home and work on.

A few "one month home" shots...
Having a family looks pretty good on this little guy ;)

Saturday, July 20, 2013

How its going

We're still here....really, we are ;)

There's just been so much going on....lots of appointments, phone calls and emails to coordinate specialist appointments, diet issues and lots of needs to meet right now since its kind of like having two babies under 1 right now.  I'd like to blog everything...this life is just so full and there is so much to share...but just not always enough time to share about it.

Joseph had an appointment with a GI specialist and a nutritionist.  The best part about that visit was that we got a lot of bloodwork back that the children's hospital had ordered. We were so glad to learn that Joseph's blood panel came back with ok levels.  This was so good to hear, since we were really concerned about his level of malnutrition.  He is really small and underweight, but his levels were encouraging.  his weight and his head circumference are very low but his height is 50th percentile...which the GI doctor said was also a good thing. He said that in severely malnourished kids, they usually plummet first in weight, then height and then in head circumference.  So we're hopeful that when he's got proper nutrition, he will grow and do well.

The down side, is that the dietician wants us to push a lot of calories and there is nothing really being done about his diarrhea.  This has been pretty difficult.  I'm constantly nervous because we never know when the problem is going to escalate...we haven't been able to link it with anything in his diet.

All of his hip x rays and neck x rays came back good, his thyroid is good but his celiac bloodwork came back positive.  We haven't been feeding him any gluten since he's come home just incase this was an issue.  He DID have bread mashed into his soups at the orphanage, though.  Probably daily.  They want to do an upper endoscopy procedure on him to verify that he definitely has celiac disease but we're not too comfortable about it.  We're just concerned about anesthesia and other complications that he could have and not be able to tell us that something is wrong.  We're hoping to speak to them about our concerns on Monday.

There's much more to write about...we've got appointments galore right now...audiology, cardiology, an extensive eye appointment, speech therapy evaluation, a swallow study and some consultation appointments to have with potential new pediatricians.  It's crazy...but we're trying to get through it.
It's hard to balance it all...but it makes us all the more dependent on God's faithfulness.  He'll get us through it.  It's hard to remember "in the thick of it" but when the chaos settles, we always know it to be true.

I am so thankful to each and every person that has called, emailed or commented.  I hope to get back to everyone if I haven't already.  Thank you for all your kind words and advice.  We are blessed by you all.

Health concerns aside...Joseph is adjusting to being home quite well :). He's found some best buddies in his siblings and we're seeing a real difference in him...he's more asseritive and interested in his environment.  He's starting to play with toys and is getting more and more affectionate each day.  He's so happy to have you pick him up and take him with you wherever you're going and he's starting to initiate hugs and affection.  He's a daredevil....this kid loves to be thrown in the air or spun around the room.  And he sleeps in some pretty hilarious positions ;)

We've got a whole bunch of errands and things to catch up on I'll leave you with a few pictures.  I plan to be back here more with updates on Joseph as well as advocating for other waiting children on Reece's Rainbow.  There are so many other beautiful kids just like our Joseph waiting for someone to put aside their "plans" and make them worth fighting for.

They are so worth it.

Friday, July 12, 2013

His Health: Continued

Hi all,

  So sorry to have left the last post hanging...I can't even begin to explain the chaos our family has been in the past week.  Joseph had such horrible diarrhea...and we just couldn't find anyone to really look at him from a whole person standpoint and help us to help him feel better.  Its been awful.  Joseph is amazing...and we love him dearly...but trying to get a pediatrician to really care about his unusual circumstances and give him some real care has been so hard.  He deserves better than what he has been getting.

I wrote a very long post describing ALL that we've gone through in the past several days...and it got so lengthy, I decided to just scrap it.  The bottom line was that we were giving Joseph care that was recommended by an excellent nurse at the childrens' hospital but she really wanted him to go to the pediatrician again anyway because of his size and situation.  And the pediatrician completely dropped the ball.  She thought we were crazy to be feeding him pureed foods and told us to just feed him starchy food to help stop the diarrhea. 

Our little guy is only 21 pounds.  And he won't drink.  I left the office crying.  I had begged the Dr. to take this more seriously and she didn't.  She actually called us at 9pm that night to say she had gone home and "couldn't get Joseph out of her mind" so she had done some research and learned more about re-feeding syndrome.  She wanted to test his electrolytes to make sure that he wasn't suffering from that.  Continual malnutrition combined with being fed nutritious food can cause re-feeding syndrome and it can be fatal. 

Long story short...we ended up getting into an appointment with the geneticist and specialist Dr. at the childrens' hospital....thank God they had a cancelation because it takes quite awhile to get in there.  Joseph has had a bunch of labs run to test for different things, x-rays and we're waiting on referrals to things like audiologist, cardiologist etc. 

Joseph stopped having diarrhea...but now he is on day 4 of not having a BM at all.  That isn't good, either.  We're going to work on some things this weekend and he's scheduled to meet with a GI/Nurtritionist next week.  He cries at every meal and I am so incredibly afraid that we might feed him something that causes even more of a problem for his little body.

The childrens' hospital was good.  But they made it very clear that we really need a good pediatrician for Joseph's regular health issues.  And right now, we have a Dr. that doesn't seem to consider him worth the effort.  She sees Down Syndrome and can't seem to see anything more than that.  Joseph needs someone that will treat him as a whole person and take their time figuring out what he needs.

If you could say a prayer for Joseph and for our whole family.  In the midst of Joseph's poor health, lots of Dr. appointments (many of which have been very upsetting) we've also had a record breaking amount of rainfall here and it seems to have wrecked our septic system and leach field.  We are unable to use our showers/sinks/toilets right now at all.  And there is no solution as of yet.  We might just need to wait it out till the ground dries out....and the prediction is for rain all of next week.  We might need to move somewhere temporarily.  It's one of those situations where you just need to choose to laugh instead of cry!

The evil one is trying so hard to discourage, stress and wear us down. 
But we know better.

God is Good.

Even with our house in shambles right now, we have eachother.  And we have Joseph.  And we love him dearly.

This little boy is amazing.  And I am so thankful that he is finally home with us.
So we continue to press on and try to get him the care he needs...and offer up all our difficulties for some dear people we know in need of our prayers.

Pray for Joseph's little tummy.  We just really want him to be happy and healthy. 
We know God has so much goodness in store for him ;)

Monday, July 8, 2013

His health: Part 1

It's been a scary couple of days.  I don't have time to get into it all right now, but we've been having some serious health concerns with our little Joseph.  We knew he was small...but we didn't realize the extent of it until we got him out of the orphanage and were able to change his diapers and give him a bath.  I've wanted to tell our experiences here...but its been hard to know how to write about something like this.  

Right now, Joseph is three years old and fits in a size 1 diaper.  Yes, I said a size 1 diaper. My Emmeline outgrew size 1 diapers at about two months of age.  She (at 5 months) is in a size 3 right now.  He's three and he's in a diaper that my other babies have outgrown by two months old.  

We've just been doing our best to feed him back to health.  And it seemed to be agreeing with him.  He seemed to be putting on a little bit of weight...and was actually eating what we were offering him.  Things seemed good. But then the diarrhea started.  A whole lot of it.  Diarrhea from a boy that already doesn't drink.  It's nearly impossible to get him to drink from a sippy cup or a regular cup.  We think he was just never given anything to drink.  He was forced to get his hydration from his foods.  So diarrhea is a scary thing at this point.

It is so very late...I will have to write part two of this tomorrow.
Please pray for Joseph.  I will share our experience with the pediatrician and childrens' hospital nurse tomorrow.  

Thursday, July 4, 2013

Happy 4th of July!

Happy Fourth of July from our little Bulgarian boy who now plays for Team USA ;)