Surgery Update for Isaiah

I have been waiting for final confirmation for Isaiah to let you know about his upcoming surgery change and some specific prayer requests.
First off, because one of the doctors who is doing his catheterization  needs to be out of town on the 10th we have been working since last  week to find a new date that is suitable for all of us. Originally
they wanted to wait until Oct 22nd and I said we were not happy with that, if they could see what else they could do. So after much back and forth it seems they "found" a time on the 8th. The issue is that it will be an afternoon surgery starting at 12:30 instead of 7:30 AM. So we will have a crankier little boy. He can have clear juice up  to 2 hours prior to surgery and he tolerates juice okay.
I wanted to give an update on his Cardiac MRI he had last week. He was sedated for over 3 hours. We knew it would be a longer procedure. However, when he was out the nurse told us they had a difficult time finding a vein for his IV. They sedate first then do the IV, which is
very helpful for all involved. When we got home I counted 21 pokes on his hands, arms, legs, feet and even groin. We are told he has fragile veins. We were also told he was dehydrated. This little pip only weights 22 lbs and he definitely takes in enough for his body weight. But he does not eat or drink very much at all. I have to coax him a lot to drink or eat at all. So whether it was just dehydration or weak veins or both, I am not sure.
When he had his cath done in July they had a similar issue. It took an hour then for them to get the IV and the Cath in his veins. So the positive that I am finding in doing an afternoon surgery is that will
give us more time to get fluids into since he is allowed water and juice 2 hours prior to surgery. Maybe it will be a blessing in disguise?
We are planning to stay down near the hospital as a family for the first few nights of his surgery. We live about 90 minutes away when traffic is bad, and lately after the floods it has gotten a bit worse.
Today we were able to book 2 rooms at the nearby base, which has very nice housing quarters with a full size kitchen for $60. Our insurance will reimburse for one room, so it will be doable for the first few nights.  This base is about 15 minutes away from the hospital, so not as close as the Marriott across the street, but pretty good for a better price and rooms.
I spoke with the cardiologist today regarding the results for his Cardiac MRI. Isaiah's right ventricle is only functioning at 22%, when it should be at 60%. The doctor said that while the procedure of
adding a stent to the left pulmonary artery will help take off the pressure, it will likely not improve that RV function too much. The whole point of this surgery is to stop the damage from occurring any
longer saving his heart and lungs altogether. I guess I thought it would do more for him and was understanding it would help it to dilate less, but the doctor was not as optimistic. He said it could take years for that to change. But our Faith is bigger than that and I know that his Creator will heal him. The doctor also said that he will always have lung issues, (pulmonary hypertension) since he has had it his entire life. But he was hopeful that he would still be able to lead a pretty regular life, playing sports even. 

Today I would just be  happy if Isaiah had the energy to run around like a normal 3 year old and drink more than a couple sips or  take a few bites of a toddler size meal at a time, without fatiguing and pushing it away. The doctor said he will continue to need oxygen for some time, but whether it
would be months or years we will just have to observe and follow him closely. He will also be more susceptible to lung infections. Which is a big reason why we wanted this surgery done before viral and flu season ahead.

I am asking for prayer as we prepare for his surgery.

1. That he would stay healthy before surgery and during recovery. We
keep having some tiny little colds going through our kiddos. I am
always having the children wash their hands and take vitamins. Isaiah
is taking his Vit C, Vit D and garlic. I have just added probiotics
too. But I am about to put a "no touch Isaiah rule" around the house
for those that are sickly.

2. I also want prayer that the morning of surgery he will not be too
agitated with not being able to eat. That is a long time for him to
wait.

3. Last request is that his veins would cooperate. I am trying to give
extra Vit C which is also supposed to help make veins stronger.

I plan to post at least after the surgery when he is still sleeping an update.

Partial Diagnosis and Some Things About Elliana

Last week Ellie and Isaiah had their sedated MRIs done. I don't know all the results yet, like Isaiah's cardiac issues and we are still having problems scheduling his surgery for which I hope to update soon just please pray for that to be scheduled soon on a day we can be satisfied about. But yesterday, I spoke with the neurologist about Ellie's brain MRI. I have suspected all along that Ellie had a brain issue going on that was causing her delays and more. I knew in my mother "heart" that it was more than just orphanage delays. It was confirmed that sometime in her very early life ( utero or during birth) she had a state of Hypoxic-Ischemic (Lack of Oygen) which did cause a brain injury, resulting in what seems to be Cerebral Palsy. 

The doctor still isn't sure what is causing her ataxic symptoms. It seems from the MRI, which would show a different part of the brain affected, is all normal. However, ataxia is undeniably there, so she will be having some more tests, metabolic  and maybe a genetic test. It could be something as simple as Ataxic CP, which is the rarest and most complicated form from what I read.

I feel glad that we have a diagnosis. I am hopeful that her brain looks as if the damage was done a long time ago and it is not progressing. I feel especially hopeful that Ellie is doing so well. She is a lot of work, but we see lots of progress and she is a joyful and adaptable little one. She is fitting well into our family and we are so blessed to have her a part of or lives. I am taking each new issue we have to deal with in stride. I give God all the glory. 

One of the issues that has been puzzling and stressful for all of us is that she has been a head banger (the back of her head on the wood high chair, wood floor, the tile wall around the fire place, etc.). She does it when she is mad to get attention. She doesn't seem to feel it. Sometimes she gets in a fit where she follows me around if I am busy and will drop herself to the ground and do this for me to pick her up. It is fine if I pick her up in a few minutes, but sometimes I still don't give her what she wants so then she starts hitting me or trying to head bang me.  It has to stop. I am so tempted to get her a helmet some days. My new plan is to stay on top of her when she does it and I have a port a crib in our dining room (I look as if I run a daycare as we have cribs all over the house these days.) Once she is in one of her fits I will tell her "no" and put her in the crib. I know she will not be happy about it, but I didn't want to put her in the room away from me so I am going to do it close by and just work on teaching her it is not okay to hit her head like that.

On a better note, her walker has been ordered. We did get her orthotics but she doesn't like them much as they are huge on her tiny feet, so it is very awkward for her to walk in them. She trips more right now unless being held just so. She is only using them a few times a day for 30 minutes at a time to build up her ability and tolerance for them.

Ellie is still so smart and cognitively right on target or ahead even, it seems. She must do everything the big kids do and she is very aware if you try to do something for her that maybe a baby would need help with, like hold her spoon when she wants to do it or hold her so she doesn't fall off the piano bench. She pushes you a way and insists, in Ellie fashion, that she can do it herself. So we are learning to accommodate for her physical needs and safety but not take away her dignity. Sometimes as a busy mom I find it hard to balance that, I am learning a lot.

We have amazing therapists working with her. Our Speech, Occupational and Physical therapists all seem to have a gentle, yet encouraging and understanding way with her. They are also each experts in their areas and related to kids with CP. I feel very blessed to have them. 

Some days I feel like all I do is drive the kids to therapy and do grocery shopping. My older kids help me so much and I don't know what I would do without them. I know some of the appointments will slow down once we get a complete diagnosis figured out for Ellie and have Isaiah's surgery all done. 
I counted how many appointments I have taken just children to in the last 3 1/2 months (since coming home from China) and I got 82! That does not include my appointments or Jay taking the kids to a few of them when he was home in the later afternoon. Those are all appointments with therapists or doctors that I have gone to. Right now our average is 8 a week. We have one day for OT (for 3 kids), one day for in home ST (for 3 kids) and one day for PT (for 2 kids). The other days are filled with misc appointments, which right now include a neuro-development psychologist for Elliana. I think in the end it will be a bit of a waste of our time as the evaluation doesn't seem to fit her age level or an adopted child. But we only have 2 more visits so I am finishing it up. It will be good at least to have a starting point to go back to if we need to as she gets older.

I love this sweet little girl. I feel so thankful that God chose me to be her Mommy. I do feel inadequate some days and wonder why He did choose me. However, I am blessed and don't want to argue with God. I know, without a doubt, that she will overcome her disabilities to a great degree. It might not be like a "normal" person but she is perfect the way God designed her to be. Amazing that I get to walk along side her and call her my daughter.

Growing Up

Lenea will be 6 on December 31st...

Yesterday, she pulled out her first baby tooth, with the help of Makenna. She has atleast one more to follow shortly and a few more in the works for the coming months.

She was so brave about it and she looks so stinking cute.....She is so proud, showing everyone and has an obsession about the way it feels.

I did shed a few Mama tears though, as it seems whenever those baby teeth start to come out and the adult teeth emerge the "rest is history". What I mean is that the "baby" years really are gone now. My baby girl is growing up, too fast.

 This was just about 30 minutes before the tooth came out.

This is not a "real" photo, but a staged one. Makenna did help her pull it out though.

Proud moment. I pay $5 for the first tooth, as an incentive for our kiddos to pull it out. That first tooth can be a bit scary. But she did really well. The subsequent teeth get $2 each.

Finally, A Date

Two days ago, after much pestering our Children's hospital that we still did not have a date for Isaiah's surgery, we were able to get an answer.....First he will still be needing a Cardiac MRI to measure and see how much scarring has taken place in his heart from it being sick. They want a starting point before his surgeries and to see if anything more serious is going on (as if it isn't serious enough?) Thankfully, they were able to schedule it at the same exact time that Elliana is having her MRI on September 17th. The things that doctors can pull. It took us 6 weeks prior to get that early time for her and they were able to find a place for him in less than 2 weeks. That is okay, I am not complaining. So Jay will stay with Isaiah and I will stay with Elliana. It should be interesting. Then, because Jay doesn't have much sick or vacation on the books he will go back to work and I will drive the two littles home. I do plan to bring a teen helper though.

Then for surgery, he will have a big pre-op day on October 9th, which includes at least lab work, xrays, social worker visits, tour of where he will be, and a meeting with the doctors. Then the following morning early on October 10th, we have a 6 AM show time for a 7:30 AM scheduled surgery. The surgery is scheduled for about 6 hours, although that is just a guesstimate. It could be less or it could be longer.

He will have the catheterization done first, in the operating room. They will balloon and stent that left pulmonary artery that is too narrow. They said they will likely have to do this in stages, so this is the first stage. Not sure how many or how far apart that will have to take place, but I imagine he will be monitored closely for a long time.

Following the cath, they will do the open heart surgery to replace the leaky valve. That too will require multiple replacements as he grows, since it does not grow with his heart.

They said we should be prepared for him to be in the hospital for about a week. We are still trying to decide all the logistics in how our family is going to manage that. Jay and I will both be there for surgery day. I will stay the first night, at least. Then we will somehow decide how to take turns. A lot is going to depend on the needs of the other children, especially little Mama's girl, Miss Ellie. Mama's heart wants and needs to be in two places. However, with that impossibility, something is going to have to give. I know God will lead us through those steps. I am praying too that he stays only 5 days which was suggested might be a possibility. 

We are also talking through the possibility of getting two hotels rooms by across the street from the hospital. Our insurance will cover one room, Jay has a free night for another one at least, through bonus points. Just not sure if we can swing several more nights in a hotel. But if we did this, we could all be closer, which would make for easier switches at the hospital. (The hospital is about 75-90 minute drive, depending on traffic times, which can be bad.) Isaiah could see all his siblings and them him. We also thought Jay could take the kids to do some interesting and fun things around the city instead of staying home, which will make the time go faster for them and a more enjoyable, memorable time.

So that is the way it looks as of now. Isaiah has a slight cold and cough this week. It is obvious his heart/lungs are struggling a bit more, but he is holding up. Our desire was to have this surgery done with him completely healed before viral and flu season hits. I am not sure that will be the case for this date, but God knows. I am praying against him getting sick, especially at surgery, as they will postpone the surgery if he isn't well.  Please also pray for Isaiah to be free from extreme fear. He has been opening up so much to all of us, even a bit around strangers. His language is exploding and I so don't want this to set him back too much. I know it might and I am okay with that, but he is in this type of thing for the long haul, poor precious boy. Thank you for keeping him in your prayers.

Our "Labor" Day Project

After the big "storm" from a few weeks ago we knew it would be time to repaint our house as well. It has been almost 10 years and I don't think they greatest paint was originally used when we bought the house. 

After much looking around at other colors of houses I liked and looking at many swatches I decided on a color called "Rustic Suede" at Lowes. Several people suggested Home Depot paint over Lowes, but I just could not find a sample of that same color. 

It is a darker grey. Some greys have a bluish hint, some have a greener hint, some of them look almost black, some of them look like dirty water. I wanted this one and Home Depot just didn't having what I wanted. So hubby said, "Let's just go with Lowes, their paint should be fine."

He bought a small can and put it on one spot (Jay surprised me one day when I was out shopping) and I loved it. I knew that was exactly what I wanted. So 15 gallons of paint later, the painting  has begun. 

We also put primer on first. I know the paint has primer in it. However, the fence guy who cleaned and refinished our fence after the storm noticed that because we have aspen trees there was mold deposits on our fence. He also found some around the house. He suggested when we paint we use primer first, as just the paint/primer mix alone would not kill the spores and he said they would come through the paint. So we took his advice and primed first. 

My strong, handsome and hard working husband has done so much. Honestly, I only helped paint for about 2 hours. Yes, we are hand painting it. All the children from Lenea on up have helped some too. We were also blessed with 5 young ladies from church today for a few hours. And with 3 days of working almost non-stop for my husband the house is only about half done. But it looks awesome! I can't wait until it is all done. Have I told you how much I love my husband? Thank you honey, you Rock, even with your sunburned calves.

 My handsome husband..

 What color is our house? We have the original light green, the white primer and a sampling of the grey.

 Lenea wanted to help too. She was covered when she was done, but she had fun.

 Mo helping as usual.

 Toby loved being a big helper too, but he was more covered than Lenea was.. It will be days before all the paint is off of him.

 Eliza, you are getting too big , too fast.. where has the time gone? Thanks for all your service to our family.  
Makenna and Jacob helped a ton too, I just don't have photos of them.

Here is the end of the day today the front of the house. Do you like our new garage door too? That was pretty dinged up from the hail so insurance gave us a new one. I love it.

This Year We Have Three, Three Year Olds..

Lord willing, 
next year at this time 
we will have 

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Four, Four Year Olds!!!!! Crazy huh? Only God and a love for children.

We have found a precious little girl who just turned 3 at the end of July who God has placed on our hearts. We are working with our agency to reuse our dossier with China and are in the process of putting in a Letter Of Intent to adopt her. Once we receive an official Pre-approval from China I will post her photo with much joy, hopefully in the next few weeks.

God is good.