Love Makes Families

Love Makes Families
A family of 7 due to the blessing of adoption!

Saturday, August 31, 2013

What people do not like to share about adoption

I started to get into this on my one week home post, but I detoured quite a bit. 
Adoption is HARD. Both before your kids are home and after.
I felt I was pretty well educated about what to expect.
I have been through tons of training in classrooms and online.
I have followed many adoption stories.
Plus I have this amazing friend who has more adoption experience than most people.

I, like many other adoptive parents, had created a fantasy in my brain as to what my life would look like once I had my boys in my arms forever!
In my perfect fantasy world, my boys bonded right away, they had no institutional behaviors, and everyone was always happy. Oh and Adam's problems were all magically better and Matthias could hear. I mean afterall what good is a fantasy if you cannot make it what you want right?

Well it did not take reality to set in. Even something as simple as my gotcha days being changed. I felt it would be best to get Adam first since Matthias lived in a group home, I would not have to take either child back into an orphanage that way, but it just did not work out that way. We took Matthias out of his group home forever on Sunday afternoon, but on Monday morning we walked him through the front door of an orphanage. He was sooooo stressed out. I held him the entire time we were there because I did not want him to think we were leaving him there.... It was a very long hour!!

The drive back to Sofia was rough on Adam. He was not used to being upright for very long. Both boys were impatient. I was exhausted already and I had not even started the week in Country with my boys really.
We arrived at the passport office, and already the first person was staring at Adam in disgust. I wanted to hit them... HARD. I chose to remain calm and hold my son a little tighter reminding myself that at least now he had a family that loved him. After the impossible task of getting Matthias to take a picture for his passport was done, we left for the hotel. 

I was beyond excited to be at the hotel. That lasted all of (literally) 1 minute before Matthias pulled the tv down. We had walked out to crab our luggage off the luggage cart and that was all the time he needed. It lay there in 3 pieces. FYI that did not happen in my fantasy world. Luckily my hubby is good at fixing things and was able to repair the TV. 

Both boys were eating. Matthias was drinking, but Adam would not take any fluids. Nothing I did helped him drink, but he was making a few wet diapers so I figured we were ok until we got home. This is the main area I expected problem, but they did well.

Adam's head appeared bigger which scared me.... We go in a couple more weeks (we have been in once already) to confirm whether he needs a shunt revision or a new shunt. I anticipated this though.

Matthias did well for the first 2 days then it was like a switch flipped. I cannot explain what it felt like as my son began banging his head against the wall as hard as he could. My heart literally broke. I would lovingly remove him from the wall and provide toys. He would crawl back to the wall and start the banging again. Each time my heart ripped into smaller and smaller pieces. Nothing I could do would stop him or `comfort him. I did not expect this.... The head banging continued, rocking started, but the worst thing was when he would punch himself in the face. He did not even react to these things which made them harder to watch. It was as though he had no pain sensors at all. 
We suspected he could not hear even though his director swore he could. This was confirmed at 2 weeks home. Trying to bond with a child who is deaf is very hard!!!! The easiest way to bond with a child (in my opinion) is hearing and visual. Well the visual thing was not working either since he was taught not to look at adults especially in the eyes. It took a while for bonding to take place with him. 
Finally, I found a way to make it happen, but it wasn't until he would tolerate more touch. I laid him on my chest, hummed a song (so he could feel it) while I patted his back to the rhythm. I will say that those first 2 weeks I was TERRIFIED he had RAD. 

Also, in my fantasy world, Matthias knew what no meant and would respond to redirection!
That is not that case. You can move him away from the same item seriously 50 times and he will go back to it. Nothing we did would cause him to stop doing negative behaviors. I had to spend seriously hundreds of dollars to block off certain things/areas of the house.... our TV, kitchen etc. He is too smart for his own good though and is already learning how to get past these blockades. I am ok with exploring, but he was flat out destructive. 
Did I mention that he cannot hear?? This meant getting up each time to try to redirect him. I was tired!!!!
I thought this would never end.

Luckily, week 3 started to show improvement. He bangs his head less. He loves being snuggled. He even crawls up to me and whimpers so I will pick him up. He allows you to redirect him on occasion. It is still rough, but I see a light at the end of the tunnel now. 
I am one of the lucky ones..... Some kids do not attach for months or even years!!

Adoption is an amazing blessing, but people need to be prepared for the first few months home!!!

3 weeks home!

We started week 3 with some morning family time. The boys woke up, and we brought them into our bed to tickle them and love on them. Matthias and Adam were interacting with each other and all of us like we had always been together. 

 Later that day poor Matthias was just exhausted from all the playing!!!
 Kaitlyn took that chance to look on Adam some!

 We also had a nasty hail/rain storm that day!

 Matthias loves spaghetti and ate 5 plates full!
 This what happens when Mommy tries to change Adam.... Matthias was right behind Alyssa too :)
 We had to run to Walmart to get some groceries and we stropped in the toy aisle. The girls were looking at toys and Matthias really liked this. He kept grabbing it. Daddy said no way!
 So, he decided to try for this instead ;)

 This is my best friends 7 year old son hold 6 year old Adam
 and Matthias LOL
 Matthias next to my friend's small 7 year old.
 Adam started drinking from a bottle and he is now up to 10-12 oz a day which is huge for him.
 We went and got a new stroller because the other one did not fit Adam very well. 
 Isn't this how everyone lays to watch TV??
 Brittany and Matthias dancing :) She babies him so much it is so cute!!!
She is my tiny 7 year old next to my tiny 6 year old :)
 Poor Adam is so sweet. He cries if anyone cries or yells.
Britt was crying and he was so upset!

 One of Adam's many doctors showing us that we could move Adam's hips in If we did it right and she showed us how!
 Matthias likes to be comfy
 Poor Adam LOL
 Cute man!
 Doesn't he look so cute like this??
 Alyssa is always taking care of Adam
 Matthias' new thing is to put toys down the front of his pjs lol

                            At home for 3 weeks.........................................................................Gotcha day
 These pjs are 24 months

Thursday, August 29, 2013

Medical update on the boys

Adam has seen several doctors and has many many more appts to come.
We have our primary care doctor. He is an amazing man who has actually adopted 2 kids himself. He read all of the boys' files before they came home and he was prepared for the worst. He was pleasantly surprised by Adam. On paper Adam was not intelligent and unable to do anything. Adam made sure he proved that wrong right away.
In the first week he was in our care, he learned 7 English words (hi, Adam, I love you, hello, and I don't know). He learned to roll over both ways. He had been working on rolling the one way, but hadn't mastered it. Within a few days we nicknamed him rollie pollie. 
Since coming home, he has smiled much more. Learned to tolerate being upright more and more. He can hold his head looking straight upward when laying down (I know that sounds simple, but it would always flop the one side or the other before). He is holding the weight of his head a little bit better. He is drinking liquids (we thicken still, but he could not drink from a bottle or do liquids when we picked him up). I think he is close to between 1,000 and 1,200 calories per day. I believe he was at about 500-700 at pickup.
Our doctor believes he will surprise everyone with what he is able to accomplish. He strongly believes with some therapy, weight gain and possibly surgeries, he will be able to walk on his own.

He has met with the dentist. She is trying to save all but 4 teeth (those top 4 are too far gone).
That will require sedation and a lot of work!!

He has met with his neurologist who was completely overwhelmed, but also ended up being pleasantly surprised. They were planning on putting Adam in the hospital because they thought he would be dehydrated, at risk for refeeding and many other things. They decided to do blood work and a CT scan. All his blood work came back normal including his electrolyte levels. His CT showed that his shunt was not malfunctioning. Apparently this is different that saying it is working though. They set us up with many many appointments, but they chose not to admit him.

He met with a comprehensive health team..... If you have not heard of them, they are amazing. It is kinda like a one stop shop as far as doctors go. It is a team of doctors including pediatricians, nurses, social workers, dieticians and a few others. The lead on Adam's team is kinda like an orthopedic, but she focuses more on muscles. Not really sure what you would call that. They were all very shocked by Adam as well. They had all had a chance to review the medical records we had gotten from B plus the notes from his neurologist. He had the diagnosis of quad cp, club feet, hydro, cataracts, hip dysplasia, dysphagia and a few other things. 
By the time we left, they were pretty sure he did not have 3 of those...... They do not think he has CP. They believe his muscles are just stuck in the same position from being left to lay in a crib for 6 years. He does not have club feet. (I told them I thought both were wrong). His feet do get pulled inward, but again this is a muscle thing from being left lay there. He also does not have dsyphagia and I am not sure why they thought he did. Dsyphagia means difficulty swallowing. He eats very very well!!!!
They believe that him learning to hold his head is our biggest hurdle and there has been talk of meeting with a plastic surgeon. They may decided to do a procedure to decrease the size of his head, so he will be able to make more progress. This cannot even be considered until we know his head is not growing. We will be seeing a PT who specializes in wheel chairs to get Adam fitted for a chair that will help with his hips (which may still need surgery) and holding his head up. We will also be doing some home therapy for his hips, feet and knees with the use of DAFOS, knee immobilizers and an ace bandage. We will not have someone coming in to do these. We will be trained on how to do them, and we will do it ourselves. 

We have an MRI scheduled for the 9th followed by a neurosurgery consult. 
We also see orthopedic surgery that same day.
On the 12th, he sees PT for a wheelchair fitting.
He was supposed to see GI, but they felt we did not need to see them.
The dietician was very impressed and opted not to even come in to talk to us. She told the doctor to keep doing what I am doing after I told them what he eats for breakfast :)
1 c whole milk. 3 scoops baby rice cereal. 3 scoops baby formula. 1 TBS olive oil. 1 TBS strawberry syrup for flavor. She also thinks double milk in his bottles is ok. Mixing formula into whole milk instead of water.
My mom went with me and was very proud. The doctors all asked if I had a medical background because I research everything they say my kids have and use all available resources.
We are waiting for an appointment to be fitted for DAFOs and knee immobilizers (to help keep his legs straight). 
We also have an appt with opthamology for his eyes on October 8.

We have had a lot of appointments and we have a lot more to come, but Adam is making great progress and continues to shock and inspire all he comes in contact with!!

Matthias has only met with a few doctors so far, but he is in better health overall than Adam.
Our primary care doctor was inclined to believe that Matthias was in fact "retarded" as the records from B indicated, but I quickly sent him in another direction. 
If he cannot hear, it makes sense that he is delayed in many areas. On top of being deaf, he was taught not to look at adults. How is this child supposed to learn to communicate if he cannot hear, he cannot look at you and they never touched him. As a result Matthias gets sensory overload a LOT. We still are working on getting him to look at us, but it is a hard one for him. He is definitely not dumb by any means. He always manages to express what he wants. He is lovable (even though it overwhelms him after a while). The doctor decided to test his hearing the easy way first. He clapped his hands as loud as he could in both of his ears and Matthias did not even blink. (Meanwhile across the room Adam jumped). 

We went to see the audiologist and they conducted a few tests. The tests confirmed that Matthias was deaf. He cannot hear anything at all in normal range. He does not have any holes in his eardrums, but they also do not have much movement. I believe she said they were shallow. 

We go to the hospital for a sedated ABR on the 13th. (yes, that is a Friday). They will put him to sleep and find out at what level of volume his brain starts responding to sound. This will determine if hearing aids will help or if we will need to look into cochlear implants (please pray that hearing aids will help him). They told us not to get our hopes up that hearing aids will help, but with God all things are possible!! 

He also went to the dentist and does not have a single cavity. We are not making any other appts for him right now until after we get his hearing figured out. The only other thing he may need is some therapy for walking or equipment.... possibly braces. He walks on his toes (or tries to) plus he holds his legs weird.

All in all the boys have made great progress since they have been home (just 2.5 weeks).

I encourage everyone to set up appointments as soon as you have an idea when your child may be home. I am so relieved to know what all is going on and get these boys the help they finally need.

Videos from our first couple weeks home.... have fun!!

For all you who love to watch videos, here you go!!

Wednesday, August 28, 2013

2nd Week home

So, the 2nd week home, we started to find our "groove" a little.
This week we started to feel more like a family of 7 and less like a family of 5 babysitting the neighbor kids.
Bonding was starting to form a parent/child relationship. I will be honest. It was easier with Adam since he is very baby-like, but Matthias is active. He does not sit still much, he cannot respond to the spoken word, and many other things. I decided to lay him on my chest and talk to him. I knew he could not "hear" my voice, but I thought he could "feel" my voice. I was right. He calmed down and actually laid there for a while. I started humming a song while I patted his back to the tune. He loved it. It was a huge forward step that led to many small ones after. I felt it and I know he did too!!!
I started my week by making a ton of baby food (pureed food) for the boys. 
It took most of the day, but it was a LOT of food!!
 Matthias started playing more with toys rather than just chewing on them.
A little peek a boo anyone?
 We thought it would be fun to take him outside for a little bit to see if he would like it.
He was not sure what to think.
 This is one of my favorite pictures of him!!
 My Kaitlyn and her cousin with matching pink casts!!
 Trying to get all of the grand kids (on Kevin's side) to sit together
Matthias and Mickey did not like it

 Cousins.... Gabe is bio and Matthias is adopted? Could have fooled me!!
God chose us as his family!!! 
 Poor kid has 3 sisters, so he is playing with a barbie

 My sister and her family bought Matthias this drum set and he loves to play with it!

 This is my niece SB with Adam.... She is 2 months to the day other than him.
Size comparison?? 

Random Status updates from the week:
Matthias now smiles when I walk into the room and seems to prefer me to almost anyone which is AMAZING!!!

Guess what?!?!?! I was eating chicken enchiladas for lunch and Matthias came over wanting some, so I gave him a bite and he ate it..... He ended up eating like 10-20 bites of it.... Chicken, tortilla, cheese, sour cream and green sauce!! He even chewed!!!!

Matthias just ate mac n cheese not over cooked, ground or anything. Just regular. He even chewed a little!!!!

 Matthias was not happy!!!
 He cried most of the morning.... found out he had strep too :(
 The boys both saw the dentist.... As I guessed all Adam's teeth ere bad. They are hoping to save them all except the top 4. All but 4 will need a LOT of work though.

 Matthias may have puked on her which is why he is wearing a blanket.... Did not want to use up his other good shirt if it happened again. 
On the plus side though my suspicions were confirmed. His teeth are made of steel. Not a single cavity.
 Mommy gave him some ice cream to make his throat feel better. He loved it!!
 This is what a stocked up fridge looks like when strep strikes!!
 tickle time
 poor tired boy!!
 He loves putting things on his head especially this since he can see through it!!
Week 2 felt more real. My boys were more relaxed. Only one day of appts. Life is slowly finding a new normal!!

A post with videos of the first 2 weeks coming soon :)

On a side note, I think I also learned this week that my friend, Amanda, is always right ;)
This is just to see if she reads all the way to the bottom :D