Monday, May 23, 2011

Pray for Kirill

Tomorrow is the big day. Kirill's mommy and daddy are going before the supreme court to plead their case. Please pray for all involved! The judge who denied them said if the Supreme court says ok then she will overturn her ruling. Please start praying at 6:10 am CST tomorrow. Here is the link to their blog.

Also some updates on other #3 orphanage babies. Julia, from the boy's room is in the hospital with re-feeding syndrome. Her body had shut down due to malnourishment. Carey says she is doing better and handling her feeds well. I pray she can go home soon. Click here for updates.

Sonya and Dusty who just got home, were sent from their pediatrician's office to the hospital. Please pray for them as well. Click here for pics and updates.

Plus I have some inside information about Shawna and Lindsay but nothing is certain yet. Please pray for them and their future family/ies. They are both 7 and will probably be transferred in the fall. :0(

Concerning Yuri

As before, I will lead with pictures and save the boring stuff for last. :o)

Handsome Yuri loves swinging.

He is such a little munch-kin!

Somebody else like swinging too!

Look at his curls! He looks like kid from the lollipop guild.

More child labor.

Caius James swinging and lovin' it.

This is his excited face.

I kept trying to get them to look at me so I could take a picture but they were way too busy to bothered with such trivial things when there was water and bubbles at their fingertips!

Oh Yuri...... Last week was a great week. He seemed to be happier and more calm. We seemed to be making progress and he spent a lot of time with the family. I rearranged the ENTIRE house to accommodated him. I think the new lay out might drive Asher and Roxie batty but it is working for him.

I felt really hopeful last week. I felt like we were moving forward but as many of you have told me it is like taking 2 steps forward and 1 back. Well... we got the lab results back from the endocrinologist on Friday with a prescription for a thyroid medicine. All the labs said was that his growth hormone and his thyroid was low. So I filled the script right away with much anticipation.

Then I read the product insert. Must be taken on an empty stomach 30 minutes to 1 hour before a meal and with a full glass of water. If you know Yuri you know that he doesn't DO liquids. No water, no juice! So I crushed up the pill and put it in a little bit of juice and couldn't get him to take it. So since I am quite proficient at NG tubes, after Caius, I put an NG tube in his nose and gave him the pill and the water straight into his tummy. Granted it took a lot to get the tube in but in the end it was better. I think it will get easier as time goes on.

On Saturday and Sunday, I gave him the chance to drink it on his own but he wouldn't have it. So I sat and squirted it into his mouth while he layed there and screamed. It took 30 minutes to give him the crushed pill and 3 oz. of water. If you didn't know what I was doing you would have thought I was torturing the child.

Not to mention the wonderful side effects of the stuff. He has lost his appetite. He is emitting a terrible odor. And his irritability is back. yay (insert sarcasm font here). I have been on the phone with the pharmacist, the endocrinologist's nurse and our pediatrician, trying to figure out what to do and it looks like we are out of luck. There is no other form of this medication and it has to be on an empty stomach with water. So now I feel like we are back to square 3. I won't say square 1 because he is much better than when we first got him home.

We might get a PT consult tomorrow and I'm going to the Pediatrician tomorrow to get a letter to give to our insurance as to why Yuri needs more the 20 therapies a year. Really? Anyway, I'm hoping to post some better news later this week.

Thank you all so much for your advice, encouragement, and support. I can't tell you what it means to me and does for me. Hugs to you all!

Friday, May 20, 2011

a dream and some pics

Hey a girl can dream! Right?
Bohdan actually did go in the potty. Yay Bohdan!!

He is such an angel!

He is really getting the hang of this toy!

Yuri saw the TV for the first time EVER today. He noticed it at about 2 feet away and quickly got as close as he could.

Its so cute that the toy is bigger than he is. Interesting fact, this was originally mine and my brothers. My mom said we never played with it. Well that is all changing now. It is a fav with my boys.

I'm sorry Erica but this pic was too cute not to post. Asher girlfriend Clari came over to play one day and they went to play in my room. I didn't think anything of it. Asher often plays in there. And this is how we found them. Pretending to be asleep under the covers. :o)

So Asher is crying one day outside. I go out to see what is wrong and this was it. I'm not sure what he expected when he put both feet into the water bowl. hmm.....?

Look at this little precious big boy! Bohdan now lets us brush his teeth! Thank you JESUS!!

Monday, May 16, 2011

This that and the other

We had a great weekend. Dede, papa woody and Alyssa came to visit. actually we went to their hotel and hung out at the pool. Caius and Bohdan are half fish and LOVED the water. Asher was ok until he drank some water then he just played outside the pool. Yuri didn't like the water too much but the metal pole leading into the hot tub was super interesting! It made noise and vibrated! Wow!

We have an answer to prayer. THE HOUSE SOLD! Thank you so much for your prayers. We feel like a huge weight has been lifted. thank you Jesus! It has been a long time since we payed just one mortgage!

prayer requests:
Please pray for the Hartman family. Remember lil Brady a Lost boy in the institution? Well they are there to adopt him right now. I know first hand how hard the trip can be and they are going to a very hard region. Please pray for them and for hearts to be changed.

Also please pray for us. I know you already do but we are faced with some really hard decisions concerning Yuri. Lately he has been more calm and happier which has been really nice but we still don't have any services or help for him. He is falling through ALL the cracks even the ones here at home. I'm spread so thin and I don't think he is getting what he needs. So we are exploring all of his options. Please pray for guidance and wisdom as we seek the Lords will on this.

I wrote this on Friday and between blogger being on the fritz and my computerYET again being a poopy pants I am just getting around to posting this.
Yuri's endocrinologist was yesterday. This is the appointment we have been so looking forward to. And even though we didn't learn anything we didn't already know he told us something that we have been waiting to hear. see if we can help Yuri. Yeehaw!!!

I mean we still have to wait for the labs to come back but he gave us HOPE!!! which is more than we have gotten in the past. We are super excited.

Wednesday, May 11, 2011

Happy Birthday Asher!

3 years old!!

This is a beautiful pic taken by Robin but I can't make it bigger. I put it on FB too it is larger there.

It was 3 years ago today that Josh and I became parents. Wow! This was just yesterday.
My sweet baby boy is growing up way too fast! How do we get them to stop growing?

Tuesday, May 10, 2011

Just normal stuff

So I have been sick as a dog since Sunday morning. Even though I don't get that saying because I was laying there in misery and my dogs are bouncing off the walls in excitement about, as far as I can tell, nothing!

So last night I'm waiting for Josh to get home and take over my duties so I can crawl up in a corner and wallow in my misery. To pass the time I decide to take the kiddos outside for some Vit D. I put Bohdan in his jump and he is a happy camper. I put Caius in his jump and he is less than enthused. In fact he is down right mad about the prospect and he is letting me know. Asher is running around playing ball with Roxie our German Shepherd.

I'm bringing Yuri outside and as I get to the end of the porch I see Roxie with a dumb look on her face holding the ball in her mouth right there near the porch. Caius is still sharing his feelings when I notice that she is in the squatting position and Asher is laying down behind her trying to get the best view possible of her rear end. It is then that I trip off the porch and my jeans catch on this wire fencing that I have up to keep everyone off the place I'm trying to grow grass.

I try to catch myself but my jeans are hooked and I'm going down. I'm trying to be careful and not drop Yuri and not to scare him either. But on the other hand I'm trying not to fall on Roxie because then she will move mid-squat and cover Asher with the stuff he is so eagerly try to figure out.

I fall onto my elbows. Yuri is fine and un-alarmed. Roxie finishes and trots off. Bohdan is non the wiser. Caius is still sharing his feelings and Asher is saying "oh no! Yook!" over and over while pointing at the pile-o-pooh that Roxie so generously shared with us.

I put the fence back together and on Asher's insistence got the pooper scooper and cleaned up the mush that started this whole mess.

Never a dull moment.

Friday, May 6, 2011

Lessons learned today....

#1 When taking a 3 year old boy through the metal detector at an airport always check his pockets for matchbox cars.

#2 Never underestimate how dirty a duck can get. That mallard got another bath today but I am not sure of the source of the water. I'm hoping it was the kiddie pool in the backyard.

#3 Never trust a rabbit. No matter how long he ignores your beautiful little growing plants that you painstakingly grew from seeds and babied for weeks. He will find them and then in one gulp destroy all your work. I think it is 'wabbit' season! BTW we have a pet rabbit who comes and goes as he pleases. I try to keep him in the backyard but he is wiley. He was a stray my neighbor found last Easter and now it is not uncommon to drive down our road and see a huge silky black bunny crossing the street. He is also housebroken and uses the doggie door, I just can't get him to stop chewing on cords. hmmmm....

#4 When you have 4 babies in diapers and the trash falls over, don't assume that what you see is an old piece of avocado. Don't assume that all fecal matter was contained in neatly wrapped balls of diapers. Oh no! Assume the worst and NEVER trust a pile of mush!

That's all for today. Cheers!

Thursday, May 5, 2011

To bathe a duck

So Yuri has a new friend and its name is Puron. Oh yes it is the AC. He crawls to it anytime he is outside. He pulls himself up, places his head on it to feel the vibration and just stands there in bliss.

Josh was reading Asher a book and I put Caius in the mix. Caius was way more interested in Dadda than he was the book. I love his face!

So I got this great deal on a train table with the whole train set at a second hand store, Thank you Tracy. :o) It has a loop in it and I couldn't believe Asher could fit inside! I wondered how the track kept coming apart.

This is Nick the 'Godfather' holding the twins.

So here is the story of the day. Asher pulls out the toy bin with the stuffed animals and brings me three to kiss, a duck, a beaver, and a monkey. I'm on the floor with the twins and don't
think too much about it when he goes into my bedroom. He often plays in there on my bed.

So I'm holding one of the babies and I catch a glimpse of Asher running from my room through the kitchen and into his room. I hear shuffling around in his closet and then he flies back through. I still am not alarmed. A few moments later he comes to me with a soaking wet duck and a burp cloth which he had procured from his closet. He motions for me to wrap it up. So I wrap up the duck and acknowledge (with as much exuberance as I can muster) that he gave the duck a bath.

After the duck is properly swaddled, he takes the mallard and tucks it under his arm for safe keeping. Reluctantly I ask "Did you give the duck a bath in the sink?" He replied with an over exaggerated head nod. " Did you give the duck a bath in the tub?" Again an over exaggerated nod of agreement. Right... ( I think). "Did you give the duck a bath in the toilet?" I get the same affirmative. Yikes!

So I go into the bathroom and follow the trails of water around the sink to the TOILET and this is what I see......
A puddle of water at the base of the toilet and the monkey and beaver waiting for their turn. Needless to say, bath time for the stuffed animals ended there.

Monday, May 2, 2011

Yuri & Septo-Optic Dysplasia

This was written by my dear friend Lyndsay. Thank for doing the leg work!

Hi everyone! I am the Godmother.. Now that doesn’t quite have the same ring to it as The Godfather but hey, what are ya gonna do?

We have all been doing some online research trying to figure out what exactly this means. I want to share with you what we found.

Please feel free to let us know if you find anything interesting that we might have missed.

First off! It looks like this is THE diagnosis that we have been waiting for! YAY!!

Now we just have to figure out who the right doctors are that we need to see so that Yuri can get to feeling better.

For those of you who have not already Googled and found the definition of Septo-Optic Dysplasia here it is:

What is Septo-Optic Dysplasia?

Septo-optic dysplasia (SOD) is a rare disorder characterized by abnormal development of the optic disk, pituitary deficiencies, and often absence of the part of the brain that separates the anterior horns or the lateral ventricles of the brain. Symptoms may include blindness in one or both eyes, pupil dilation in response to light, rapid, involuntary to-and-fro movement of the eyes, inward and outward deviation of the eyes, low muscle tone, and hormonal problems. Seizures may also occur. In a few cases, prolonged yellow skin discoloration may occur at birth. Intellectual problems vary in severity among individuals. While some children with SOD have normal intelligence, others have learning disabilities and mental retardation. Most, however, are developmentally delayed due to vision impairmentor neurological problems.

As you all know Autumn found out that Yuri is legally blind and everyone can see that he has rapid, involuntary to-and-fro movement of the eyes. He also seems to have some pretty seriousdevelopmental delays.

When Yuri was diagnosed NO ONE mentioned that learning disabilities and developmental delays are a part of Yuri’s diagnosis. Now after doing our own research we can see that there is reason for little Yuri’s behavior.

Yuri has two out of the three “signs” of septo-optic dysplasia.. The first major feature would be the severely underdeveloped optic nerves and the second major feature is the underdevelopment of thepituitary gland.

The pituitary is a gland at the base of the brain that produces several hormones. These hormones help control growth, reproduction, and other critical body functions. Underdevelopment of the pituitary can lead to a shortage of many essential hormones. Most commonly, pituitary hypoplasia causes growth hormone deficiency, which results in slow growth and unusually short stature. Severe cases causepanhypopituitarism, a condition in which the pituitary produces no hormones. Panhypopituitarism is associated with slow growth, low blood sugar, genital abnormalities, and problems with sexual development.

The signs and symptoms of septo-optic dysplasia can vary significantly. Some researchers suggest that septo-optic dysplasia should actually be considered a group of related conditions rather than a single disorder. About one-third of people diagnosed with septo-optic dysplasia have all three major features; most affected individuals have two of the major features. In rare cases, septo-optic dysplasia is associated with additional signs and symptoms, including recurrent seizures, delayed development, and abnormal movements.

Typically people with Septo Optic Dysplasia have abnormalities of the brain. These abnormalities may include how the brain is formed and or how the brain works. While both usually occur, sometimes a child has a problem only with the structure of the brain and at other times, a child has a problem only with the function of the brain. All problems with the brain can range from mild to very serious. When a child is diagnosed with Septo-Optic Dysplasia he or she will undergo a number of evaluations and brain function tests. A Neurologist can look at the brain structure through the use of CT scan or MRI. After these tests are performed your doctor should be able to tell if there are major problems with the brain structure.

Yuri has a perfectly normal brain structure. The problem is in the brain function which can be much more difficult to evaluate.

Now we need to find out what all is affecting Yuri and how we can help him. The pituitary gland pretty much controls all the glands in the body and all the hormones that those glands create. This can affect growth which explains Yuri’s small stature, metabolism and sexual development. Some children who lack growth hormone also have low blood sugar which we still need to test Yuri for. We already know that he cannot tolerate dairy, soy or wheat. Adrenal glands which are also controlled by the pituitary make small amounts of cortisol at various times during the day. Cortisol is necessary to help the body create energy, control the blood sugar and allow for proper heart and lung function. Also, with a poorly functioning pituitary gland, the thyroid gland does not get the proper signal to make thyroid hormone when it is needed. Thyroid hormone helps in normal growth and helps make energy for the body to function. Lack of thyroid hormone can lead to poor growth, slowing of mental and muscle function, weight gain, feeling cold, hair loss, hoarse voice, brittle nails, and dry coarse skin. The pituitary gland also produces a hormone called Anti-diuretic Hormone that is responsible for keeping water in the body by controlling the amount of urine that is created. If you know Yuri you know that boy always had a dirty diaper… Without enough ADH a person cannot control the amount of urine and he could become dehydrated. The person lacking ADH feels thirsty, has a dry mouth and yet continues to make large amounts of urine. There is treatment for all of these potential problems. Yuri has a doctor appointment next month with the Endocrinologist who will hopefully be able to grasp what is going on with Yuri and what his body needs to function. Yuri never seems to be able to stop moving and just relax. We are praying that the Endocrinologist can help with the right medications.

Below I have listed the symptoms that Yuri displays that until now we did not know the cause:

GI issues - throwing up, sensitive tummy – Underdeveloped Pituitary Gland which can create problems with metabolizing food

Small head and stature – Lack of thyroid hormone can lead to poor growth

Awkward/jerky movements – In rare cases abnormal movements can be associated with Septo-Optic Dysplasia

Mental delay - Intellectual problems vary in severity among individuals

Everyone please pray that the Endocrinologist has the knowledge to help Yuri progress to the best of his abilities.