Family Pic Nov 2015

Family Pic Nov 2015

Thursday, May 26, 2011

Julia's coming home tomorrow....

Yay!  Today they finally confirmed that Julia is coming home tomorrow.  We are so happy....we have missed having her at home.  Of all of our children, it seems that our three year old, Regan, has missed her the most.  I took her with me today to visit Julia.  She was loving on her and kissing her.  She loves her so much.  On the ride home tonight, I told her that she is coming home tomorrow and she got super excited.  Julia's crib was in our bedroom at first, but after about a week, we moved it into Regan's room.  Regan has been begging to have her in her room with her, but we had to keep telling her that she needs to start out in our room and we'll see how things go.  When we decided to move her, Regan was so happy.  Thankfully, when Julia is up at night playing with her toys, it doesn't keep Regan awake.  So Regan has been missing her roommate.  One of the nurses went over the feeding pump with me today and tomorrow we are going to take the NG tube out, so I can place it in one more time before I take her home.  She was about 17 lbs. 6 oz.  today.  She is slowly, but steadily putting on weight.  It's almost 2 pounds up from when we first brought her home.  You can visibly see the difference.  She is also becoming more and more energetic every day.  It also seems that there is more in her eyes each time I see her.  She is coming alive and feels so much better I'm sure. 

It has been so warm here and Aaron sweats like crazy!  He plays hard outside.  Yesterday, he and the other kids were so sweaty that I got out the sprinkler.   Aaron loved it.  We got his bathing suit on and off he raced (crawling as fast as he could) toward the water.  He sat there kneeling for something like a half an hour while the sprinkler went back and forth and up and down his face and body.  He laughed every time and the water hitting his face hardly phases him.  After a while he did get cold.  We had placed the sprinkler in the shade so he wouldn't get sunburned.  Unlike my other kids, his skin is very fair.  Not sure yet how well he tans/burns.  Our 4 feet deep above ground pool is now ready, so while Regan and I were at the hospital today, daddy took the other kids for a swim.  He said Aaron is not very comfortable with the large quantity of water, but he had fun as long as someone was holding him.  He was not ready to float on his own yet.  We buy these life jacket/water wings type things that have a part of it that wraps around the front.  It is made to hold them up higher in the water than just regular water wings.  They are also not inflatable, but made from the same material that life jackets are made with.  They are great and I'm sure he'll get used to it soon.  It never ceases to amaze me how quickly he acclimates to new things.  Oh, before I forget.....today we were driving somewhere and our two year old, Evan, was crying in the car.  Aaron comes out with, "What's the matter?"  Yes, his English is coming along.  He is like a 10-12 month old age baby, when you know the baby can understand much more than he/she can say.  And then shortly after this stage, the speaking comes on rapidly.  We can't wait.  We know it's coming!!

Monday, May 23, 2011

Wow!!!!!!

I have never posted twice in one day and this is not going to be a long post.....but we are soooo excited!  Julia weighed 17 pounds 2 ounces this morning!!!  This is 10 oz. up from yesterday's weight.  So incredible: )  Praise the Lord!!  She is also tolerating her daytime bolus feeds very well.

Aaron wanted to get in her crib today and play with her while she was getting her noontime feed.  He was so sweet and gentle with her.  She enjoyed having him in there.  Oh, also.....we were at Chick-fil-A for lunch on our way home from the hospital and Aaron sang 'Jesus Loves Me' to Grandma.  He knows the whole song and it is very sweet....he is so proud of himself : )

Update on Julia and Aaron

Julia weighs 16 pounds 7 oz!!!!!  That's almost a whole pound gained since we brought her home.  She is thriving in the hospital.  Last night she was smiling, laughing, playing and very rambunctious.  As of yesterday she was up to 55 mL of continous feeding an hour....that's up from 30 mL when this started and their initial goal was to get her up to 42 mL.  Last night they upped it to 65!!!  Today they are also discontinuing the "continuous feeds" during the day and switching her to bolus feeds.  She will get fed at 9, 12, 3 and 6 and then go back to continuous feeding throughout the night.  I am sure she will contiue to gain weight steadily.  Yay!!  So the dr. told me that she is doing so well, that she may come home by the end of this week.  We cannot wait : )  She will have to continue to be fed through the NG tube for about 2 months.  Then she will be evaluated to see if she will take enough food orally or if she needs to have a GI tube placed in her stomach.  Some of this will depend on when she is strong enough for surgery.  But for now, when we bring her home,  we will need to be placing the tube down her nose to her stomach.  They had me do this once a couple of days ago and it's not easy.  Not because it's difficult to feed it through, but she is a fighter and is very strong.  The nurses are impressed with her strength.  It takes two people to hold her still and one person to actually put it in. 

Aaron continues to thrive here at home.  He is coming out with more English on his own.  We are starting to realize that he understands more than he can say.  We will be at the dinner table and talking about something and all of the sudden he chimes in (in Russian) with hand motions and such and we realize he is joining in on our topic of conversation.  He knows what we had been saying.  It's so awesome.  He loves to play outside with all the kids.  He got a little bit of a sunburn on his arms a couple of days ago.  Good Vitamin D for him though. The mosquitos LOVE him.  His poor neck, face and arms got bitten up as it got to evening time.  His favorite is the sandbox in the back yard.  He was so proud of himself when he mastered the monkey bars dome.  His upper body is very strong and his muscles are very defined.  He pulls with his arms and draws his legs up to the bars.  As he was accomplishing this feat, he yelled, "Ethan! Look!"  He wanted his "big" brother to watch him. 

We are off to the hospital again today.  Since Julia's roommate was moved out of her room, they said they will make an exception to the rule of no children under 12 allowed back in the rooms....as long as no one is sick.  Grandma (Steve's mom) wants to visit Julia today too, so she is driving here this morning and we will all drive down together this morning.  On Saturday, we all went down and we were able to bring Julia out of her room to a family/toy room, so the kids could see her and play.  Yesterday, I went down by myself and left the hospital at 9pm and didn't make it home until 11:30pm.  It's normally a one hour drive, but two lanes were closed down on 95N for 3 miles of paving.  I was in almost complete stand still traffic for almost 1 1/2 hours.  I was very exhausted by the time I made it home.

We will continue to update you on Julia and Aaron's progess.  Pray that Julia continues to thrive and that she can come home before the weekend!!  My mom, dad, and brother from CT are coming down for Memorial weekend, as well as my brother from Chicago.  They all can't wait to meet both Julia and Aaron and it would be such a blessing for her to be home and not to have to meet and visit her in the hospital.

Saturday, May 21, 2011

Craziness and thankfulness

So if the Schwenzer's didn't already have enough craziness going on with two new adopted kids, one of which is in the hospital in Richmond for severe malnutrition, and having 7 girls sleep over for Kacey's 12th birthday party last night.......Ethan fell off the top bunk in the camper this morning, hitting the back of his head on the floor.  During the first hour afterwards, he complained his head was progressively hurting worse, began crying, and then started vomiting.....off went he and Steve to the ER.  Thankfully, they are on their way home now.  Doctor monitored him for a while and thinks he should be fine, though we should keep an eye on him today.  In a half hour, the 7 girls should get picked up and then the whole family will head down to Richmond to visit our sweet Julia.  We are so thankful for the medical care that Julia is getting and praise the Lord that Ethan seems to be fine.  Thank you God!!!

Wednesday, May 18, 2011

Julia in Hospital

I wanted to apologize for the lack of updates on our blog. We have been having some major issues with our computer systems at our house. We currently don't have a single computer up and running. This makes blogging rather...well...impossible. I am working on getting one of the computers working so we can have one less thing to worry about.

Now on to the updates. Julia had an appointment with a pediatric GI doctor down in Richmond yesterday afternoon. We were eager to get her to this appointment because she was not eating very much for us. She was refusing to take her bottle for the last several days. She did manage to take about 10 ounces yesterday morning when she woke up, so that was a bit of a relief. But, we still were very worried about her. Carey took her down to her appointment and very quickly the GI doctor said Julia needed to be hospitalized. He explained that none of her GI systems were working correctly. They call it re-feeding syndrome. Her malnourishment was so bad that her body had basically forgotten how to eat and digest. There was no way for Carey and I to get her healthy again by just bottle feeding her. As a matter of fact, force feeding her could have jeopardized her life. The doctor explained that because her body is this malnourished, reintroducing food is a delicate process. The food needs to be introduced gradually while closely monitoring electrolytes and her heart.

So, Julia is now hospitalized down at MCV in Richmond in their pediatric progressive care unit which is one step below intensive care. They have placed a drip tube through her nose and down into her stomach. They are going to slowly bring her digestive systems back on track. They are starting her on an ounce of food through the tube per hour. They will monitor her electrolytes every twelve hours to see if her nutrient and chemical levels will come back into balance. They said she will be in the hospital at least two weeks. It is a great relief to finally know part of what is going on in her little body and knowing that she is getting help now. Please keep her in your prayers that she will make a swift recovery and her body will finally get the nutrients it has so badly needed.

On a lighter note, both Aaron and Julia had ophthalmology appointments on Monday that were very positive. Julias occasional crossed eyes are a result of being very farsighted. So the doctor wrote her a prescription for glasses that will help her in a couple ways. She will now be able to see us without having to strain so hard. And we will be getting her transition lenses which will help with her light sensitivity. We found her a pair of glasses that fit, but we need to wait for them to officially be on our insurance before we can get the glasses. She will look so cute!

Aaron's eyes see just fine. So that was good news. But one eye tends to go off to the side instead of staying focused. The doctor explained that with a couple of botox injections in the eye muscles on his right eye, this problem should completely, or at least mostly, clear up. That was great news! We will schedule that procedure once the insurance is completely in place.

As for home life, Aaron is adjusting well to being in our family. We have discovered that he thoroughly enjoys doing certain tasks around the house. He actually seems to get giddy over the idea of putting laundry in the washing machine and starting it and then switching it over to the dryer. He actually gets upset if there is no wash to be done on a given day. Hopefully some of this work ethic will rub off on our other kids. He also likes helping with the dishwasher and he would love to vacuum. We have a toy vacuum that he pushes around the upstairs and pretends to vacuum everything. Maybe we should get him a dust buster and let him do some work while he's playing.

Well, that's all for now. I have to get back to work. Once we have a computer back up at home, we will add some more pictures up here. Please keep Julia and our family in your prayers. Thanks and God Bless!

Wednesday, May 11, 2011

Soooo busy.....

Hi everyone!  I am so sorry I don't seem to be having the time to update as often as I would like.  Please be patient : )  And keep in mind that I also homeschool and I have A LOT of catch up school work after having been gone for almost 6 weeks....I REALLY do not want to be doing school all summer.  We also keep having computer problems....a long story....

Anyways, I just wanted to tell you all that I will try to post more pictures very soon.  Everyone is doing very well.  Julia is coming alive more and more everyday.  She is so much more vocal with all the auditory stimulation she has been experiencing with so many kids around her all day.  She doesn't talk, but is very vocal with her sweet voice.  She is smiling and laughing a lot and seemingly enjoying life all around her.  She enjoys the fresh air as we have her outside as much a possible.  Spring is such a nice time to be outside.  We are continuing to try and get her to drink as many bottles of PediaSure or Carnation Instant Breakfasts a day, but about three 8 oz. bottles is as much as she will take.  All of the kids love taking turns feeding Julia her bottles.  I have taken pictures of this and will be sure to post them as soon as possible.

Aaron is doing very well too.  The language barrier is the most difficult part.  He doesn't seem to understand that we don't understand Russian no matter how many times we tell him.  He talks and talks and talks like he thinks we will miraculously understand him at some point.  We so wish that we could understand all that he has to say.  We are managing, but cannot wait until we can communicate better with him.  He loves playing with Ethan and Regan.  He and our two year old, Evan, butt heads the most.  In some ways, mostly socially, they are on the same wave length.  Aaron seems to like routine and order, which is good for me.  I like order and organization.  Once he seems to know what is supposed to happen next, he is ready to go and do.  He is eager to be mommy and daddy's helper.  His favorite chore to help me with is emptying the washing machine and putting the clothes in the dryer.  He even puts the dryer sheets in and LOVES to push the button to turn it on.

We had a drs. appt. for both of them down in Richmond last Friday.  The dr. recommends that Aaron see an eye dr. since one and possibly both of his eyes stray off to the sides.  Once in a while they align properly together in the front, but not very often.  He obviously needs to see a physical therapist and most likely an orthopedic surgeon about his legs.   We are hoping and praying that he will be able to walk better someday.  He uses his walker, but it is slow and he obviously can't play outside while using it.  So he crawls everywhere.  Brand new jeans will have a whole in the knees after one wear.  I am patching up jeans daily.   And when he wears shorts, we are trying to get him to wear knee pads.  But he doesn't like them and then the skin on his knees and shins get red and sore.

Anyways, they took 10 viles of blood from each of them, to check for how strong their immunizations took effect and what additional boosters they may need.  We had a fresh diaper from Julia for the lab to check for parasites.  Aaron is eating very well here and is not a very picky eater.  He most certainly understands that he has to finish the food given to him on his plate before he can have dessert.
 
Julia also saw a geneticist while we were in Richmond.  The geneticist thinks that we should back away from zeroing in on her definitely having Cockayne Syndrome.  She is not saying that she doesn't have it, but she would rather do a complete genetic panel and look closely at all of her genes to get a better picture of what she may have.  She also would like do have some x-rays done to help with a diagnosis.  She says that Julia doesn't appear to have cataracts, which is usually a symptom of CS, but she would like her to see an eye dr., just to make sure.  She thinks there are definitely some signs that she could have CS, mostly the aging/glossy look of her hands and feet and the texture of her hair.  But she says there are many other symptoms that she should/could have that she is not classic for.  One thing that I have been told by others who have had CS children is GI issues, typically vomiting.  Julia has only vomited once since I have had her and that one time I think was because I overfed her.  She weighed 15 lbs. 8 oz. at my local pedicatrician's office, with clothes on.  When we were in Richmond, she weighed 17 pounds with the same amount of clothing on.  They are different digital scales, so I have no idea if this difference is due to variations between the scales or if there is a possibility that Julia has gained 1 1/2 pounds.  It would be nice, but I'll have to wait and get her weighed on the same scale before I get too excited.

Well, I have been all over the map here....but just wanted to give a quick update.  Hopefully, in the next few days, we can get more pics up.  Stay tuned......

Sunday, May 1, 2011

Last six days in pictures......

Sorry it's been so long.....we have obviously been busy and our computer has been having issues.  Everything is going very well.  Julia is sucking down 3-4  8 oz. bottles of  Pedicare or Carnation drinks.  We are hoping to fatten her up.  When we took Aaron to our local pediatrician to get a prescription for a walker, we had them weigh Julia.  With diaper, cotton tights, socks, sleeper and fleece hoodie on she only weighs 15 lbs. 8 oz!!  Yikes!!!   We have a drs. appt. for both children on May 6 down in Richmond.  Julia will see a geneticist this day as well. 

Aaron is doing very well getting along with all of his new siblings.  He is testing boundaries and learning the rules here.  He is very attached to me and definitely see me as his caregiver.  He cries if I need to be upstairs with the other kids while he needs to stay downstairs.  He is so curious and needs to have constant supervision for his safety.  If I am busy getting other kids baths and brushing teeth, I need him to be downstairs with Steve.  Hopefully soon he will learn adjust to our "routines." 

We have no pictures of our "homecoming" at the airport.  There was a whole bus full of people that were coming up on our church bus with banner and all.  Unfortunately, the bus broke down on the way to the airport.  Aimee and I came out of customs with the kids and found no one there to greet us.  I obviously called Steve and found out what had happened.  After such a long journey, this was a very big let down.  The group managed to get someone else from our church to drive a 15 passenger van to pick us up.  They could not fit everyone so my family, Aimee's husband and 2 of her kids, and Adeye Salem. finally arrived about 2 hours later. Everyone else found other rides back home.....quite a bummer.  But these things happen.....we made it and even though it was disappointing, we were so exhausted that we were just glad to see our family and get HOME  : )

 Gotcha Day!!

 Tatyana giving Aaron some pointers for the trip home for me.

 Our 6 hour train trip

 Aaron organizing his stuff on the train


 Driving around on the day we finished up at the Embassy
 
 
 Getting ready to head to the airport

 Just before take off

 Julia sleeping on the long flight home

 Ethan, Regan, Kacey and Aaron


 Running errands.....
 
 

 Julia is stylin' in her pink sunglasses...she actually keeps them on!!
 


 Nap time : )
Ethan giving Aaron a ride on his four wheeler.