Busy

Things have been crazy busy around here. We've had all 8 children get sick. Then they all saw the doctor, all got on antibiotics, all got better. Micah ended up with temporary arthritis due to strep. I didn't even know that was possible. We were nervous it was cancer. Doctor was worried too. Thank God for strep!

Then just as we were all over the sickness and starting back to normal Misha's pharmacy, Optium RX, refused to send him his life sustaining medication. After missing one dose he went into adrenal crisis and we ended up at the ER. We were livid at the pharmacy! The insurance didn't pay their portion from the previous month so they put the account on hold and refused to do anything more. We would have paid for it. We would have done anything! We now are filing complaints everywhere we can. Our kid almost died due to their negligence.  After that we spent days fighting to get him his meds. It was all very traumatic and I'm still extremely upset by it.

Good news on Noah, he was approved by our secondary insurance (not UHC) for his medical bed. UHC refused to approve the bed but approved the canopy for it. What would I put it on? Lol. Anyways, we are super excited to get his bed. We should have it in 10 days. We bought him a new sheet set and can't wait until we can finally sleep easy knowing he is safe in his room. So grateful!!

Micah has been such a great kid lately. He is loving life. Happy. Expressive. He is talking and carrying on conversations. He is kissing everyone. I wonder if his stomach is healing and he is feeling better? He is on a lower dose of his behavioral meds so that can't be it. I'm beyond thrilled to finally have my kid! He was so fearful when he came to us. He was a child who was neglected and abused and had to fight to live. Now he can be free, play, love, has food, shelter, love and is thriving from it.

I guess we can't talk about the family without bringing up Judah. He isn't doing well in any aspects. He is self abusing again. He lost 3lbs recently. He is refusing to communicate. He really does so well in an institionsl setting but not in a family setting. It is very hard to parent him. He acts as though he doesn't want to live. We are now seeing a metabolic geneticist to try to figure out reason, weight loss, etc. he has almost all the symptoms for a mitochondrial disorder so we have to get that checked. We also will most likely be getting a gtube. I think that would really take some of the pressure off.

Trinity turned 14! I can't believe it. Noah turned 5! Sarie will be 8 in a couple days! Everyone is growing up. Things are busy but good. God is good.
Be blessed

Update on Micah

I have been meaning to write an update but we've been so busy. So as you have read Micah had his scopes done. The stomach looked horrible and esophagus was perfect. Well the doctor called with the biopsie results. The first set of biopsie results were inconclusive. The doctors office said well we are just going to put him on reflux medicine. I ask why if his esphogus was clear. They said that the irratation and inflammation could be cause by relax, meds or food. I said ok but his esphogus is clear which means no reflux and he has never been on any medication, at least not at our house and at the foster home he was in they didn't take him to the doctors for 4 years. So that leaves food. Why don't we try to figure this out instead of just guessing and putting a bandaid on it. The doctors said it didn't matter what it was treatment was the same, reflux meds. So we started him on them.

Next, we got the results from the biopsies that would tell us if he was missing an enzyme needed to process sugar and that's why he has allergies or intolerances to sugar. He apparently is missing all the enzymes in his gut to process pretty much anything. There is an overgrowth of bad bacteria in his stomach. When they see this it usually means the allergies or intolerances aren't real and just caused by the gut. So once the gut is healed he would be able to eat like us. There is a chance though that he could still have the into lenses after this is all said and done and then we would start replacing the enzymes. 

So the treatment plan:

Reflux meds

Antibiotics

Remove every once of dairy from his diet

Ok, but dairy wasn't the issue and he already doesn't eat dairy just a little cheese every once and a while. What about sugar? Oh....ummm.....yeah I mean you can avoid that too. WE DO!!!!! 

So I have given this a shot and I had high hopes. Except that since we've started this Micah has been sick. He got an uncontrollable running nose while he never had before and now he's vomiting. Plus his stomach has been huge!

So now he has to stay home from school. He has a very restrictive diet which makes him feel even more left out and different. His body is full of medicine with side effects. Ugh! 

I have calls in to his doctors and surprise no call backs yet. He is in bed missing out on his day at school which he loves. I hate this for him. 

Please pray for our family.

Be blessed

Scopes

Micah had to have an endoscopy and colonoscopy with biopsies. He is allergic to sugar and the doctors have said that maybe it can be fixed. If it is just an enzyme that Micah is missing then they can replace that and he will be able to eat everything with no reactions. This made me very happy. I have always felt like he feels left out or different because he cant eat a lot of what we eat.

So yesterday we did the pre op prep. He had to drink an entire bottle of miralax and only was allowed clear liquids. Since he is allergic to sugar that meant mainly water and chicken broth all day. I don't know if he didn't like the effects of the miralax or if he didn't like the chicken broth but he refused to drink anything else the rest of the day yesterday. He then didn't want to go to the bathroom either. Once after the second dose of miralax he went to the bathroom and he screamed. I think that was enough to make him stop eating and drinking.

We reassured him all day this was not a punishment. He was not bad. Tomorrow he could eat after his procedure. We never use food as a punishment but his foster family didn't feed him much. I think they used it as a punishment. He was very sleepy and we had a good bit of behaviors.

He wasn't really listening this morning either when we got him up to go to the hospital. I keep reassuring him and telling him that he would get juice, go to sleep and when he woke up he could eat. Everything was going good. They did check his blood sugar before the procedure because they said he looked really out of it. The anesthesiologist knew me and ask about the other kids. How sad is that that  hospital staff recognizes me. Oy! Blood sugar tested at 62 which they said was fine. He went back and it was taking a bit longer than they said it would. I would have been fine except Debbie Downer called me and was giving me great worst case scenarios. After the call I got my book out to read but my mind kept wandering. Finally the doctor came back. I was totally not prepared for what I saw. It looked bad. There was black stuff all over the pictures, red lines, white spots. What in the world! The dr didn't give me any indication as to what it may be. He said we would wait for the biopsies but it didn't look good. I was excepting everything to look fine and us to go home with an RX for an enzyme so he could have birthday cake. Not this!  So now we wait!

The colonoscopy was fine except his medication that he takes was laying in there whole. 2 days worth! I have no idea what that even means and have a call in to Psych.

They then called me back to recovery where Micah refused to wake up. He screamed and hit the cup of water out of my hand. He cried and turned his body away from me. He had super human strength and refused to do anything but sleep and drool. So i took the Popsicle they gave me and stuck it in his mouth. Oh he did not like that. I cleaned him off with a washcloth and that was just as bad. Finally after bribing, poking, messing and pleading he finally drank the dang water and we were allowed to come home. When we got home he refused to go to sleep. LOL. So I fed him and he has been grazing on food all day. he is perking up.

So now I guess we wait and hope that whatever it is he can be treated and he wont have any issues.

Be blessed

Dentist Day!

I love that my kids dentist will see all 8 of them on the same day, one right after another. It makes it so much easier with my hectic schedule. The kids all did very well. Judah and Misha refused to listen unless I was right there. Judah also refused to open his mouth but I made him.  No cavities on the boys or AJ. Trin has some issues as well as Sarie and Cherry. They all got a new toothbrush and toothpaste and they are happy campers.
We left there and went to pick up Micahs glasses and then stopped to get Trin some glasses cleaner for her glasses. Once we got home I had to give Micah miralax and clean him out for his procedure the next day. All in a days work.

Be blessed

My crazy week

This week has been a doozy. 

Noah

Monday Noah had a GI appointment about an hour away bright and early. 

We hadn't seen this doctor is almost 3 years. Recently Noah has been having issues with his stomach becoming 2-3 times lager than normal. It gets so big so fast and looks really painful. I wanted answers. She said she felt like he had a milk protein allergy. I told her I noticed that he was fine until we put him back on pedisure. We had even tried pedisure peptide but both resulted in the same issues, bloating, grumpiness, runny nose, more susceptible to viruses. She said to stop using it which I had 3 days before this appointment. In those 3 days there were zero issues with bloating, he was happier, talking more, more cooperative. Then he did have one day where he bloated again really bad and his nails turned blue. That made me nervous. He was really really cold. We had to then head back to the doctors and back to the hospital for more tests. X-rays and labs mainly. He ended up seeing his pediatrician twice this week on top of seeing GI and 2 trips for X-rays and labs. The end result was well we think he is ok and just getting backed up sometimes. Also he has raynards and there isn't anything you can do but keep him warm. 

Micah

Micah had an appointment with the GI. He has an allergy to sugar we were told when he was first home so we avoid the sugars as much as possible. Well I recently found out from his Ped that it's more likely he is missing an enzyme that breaks down the sugar and that can be replaced. We were thrilled that there may be something we can do to help him so that he can eat what the rest of us eat. I firmly believe he feels not quite part of the family and left out due to his dietary restrictions. Micah also saw his Pediatrition this week due to his drowsiness. He sleeps all day and night. No reasons we can think of he's just always tired. She said his adenoids are big but not to the point of obstruction and she really feels it's time for a sleep study. We have had all the labs done tested for everything and this is what is left. Maybe he has sleep apnea? We called the sleep doctor and they can't see us til June. Umm....I ask for another sleep doctor and left s message for them to call me. We also had an appointment for psych. It was a new dr and he suggested in home behavioral therapy. We have looked for that for years and have yet to find something. He suggested we call MHMR which we did and surprise no answer and the haven't returned my messages. He did feel like it was ok to try to go down on Micahs meds. So we have done that. His teacher and I are in constant communication so if this med change doesn't work we will go back up immediately. 

Misha

Misha decided he didn't want to be left out so he woke up and was soaked in urine. His diaper had exploded and he was peeing a lot and drinking a ton all day. This means his one med isn't working anymore. So when this happens it isn't just a mess I need to clean up it is a call into his endo and emergency bloodwork. Then a med increase then more bloodwork. So he has had labs twice this week :( We increased his med and hope that fixes the problem. 

I have also had to call to get med changes ordered and supplies changed from the DME (medical supply company). Noah isn't happy to give up his pedisure or as he calls it his "cardoor". I have started him and Misha on almond milk and coffee. I am hoping it helps the ADHD. We will see. In addition to our busy medical life, gymnastics started up again this week for the 3 middle gals and Trin had her acting class start and had an audition this week for Alice in Wonderland. The dog had to go to the vet to be neutered. We did find little moments to find time for school too. We wore a lot of hospital masks and diffused a lot of thieves this week. I am just so relieved this week is over. 

Next week we have 8 dentist appointments and Micah needs cleaned out and will have an endoscopy and colonoscopy both with biopsies. One night next week Paul has a rodeo work thing so it will probably be a pizza or crock pot kinda day. Most of next weeks appointments are on one day. 

Never a dull moment in my humble abode. 

Be blessed

One of those Mothers

Yes I am one of those mothers. The mother that prays for school break to be over so she can ship her kids back to school. The mom that has a love/ hate relationship with holidays and summer vacation. A mom who absolutely loves her kids. 

I use to be the homeschool mom that rolled her eyes when a mom of public schoolers would complain when their kids were home from school. Karma baybee!!! I still homeschool 6 of my kids but the two that are in school need to be in school. 

When we first decided to put the boys in public school it was admittedly a very hard decision for me. At first I felt like a failure. Why couldn't I homeschool them? What was so wrong with me that I needed to put them in public school? Then I was afraid. They are mostly nonverbal what if someone hurts them and they can't tell me? But after a lot of researching and even more praying we felt like this was what God wanted us to do. Then something miraculous happened. Not only were the boys loving and thriving in school but the house was calmer, quieter and there wasn't a stressful angry heaviness here anymore. 

Now, I am able to be their mom and the school can do the therapy and make them eat and discipline them. It's not all on me. I'm not the only bad guy. Plus, they both have RAD, reactive attachment disorder. So anytime their schedule isn't the same say for instance winter break, things at home get really unbearable. They are both master manipulators. They can charm the pants off of any stranger but oh look out because hell hath no fury when you are their mom and dad. Usually there is lots of stealing food, smearing feces, pooping their pants, pooping in the tub (there is a lot of poop) pretending not to understand English or pretending all of a sudden to be deaf. Fun times. It brings a whole new level of chaos and crazy to the house. 

It's no fun when you are trying to have a great winter break and do all kinds of awesome traditions and just have fun especially for the other kids who really deserve to have a great time off.  We do insane things like put up a Christmas tree (gasp!), go to the zoo, bake cookies. I know what your thinking, I am the worlds worst mom. We put up the tree and there is lying, pooping pants, smearing poop and stealing food. We go to the zoo and there is pooping pants, lying, stealing, hitting, instant and profound deafness(man do I wish I had that ability. It could really come in handy.) We bake cookies and well you get it. It gets worse when people come over.  So that is our two week break from school. Imagine in the summer. So fun. 

So yes, I am that mom who can absolutely not wait for her kids to go back to school. I get more and more nervous the closer we get to breaks. I want to throw a party when I see the bus pull up to our driveway. And you know what...that's ok. I love my boys and I do what is best for them. I'm learning not to care what other people think and it's a freeing place to be. 

Be blessed

Christmas Break

Christmas Break

One of my very favorite things is to spend time with my kids. I love when we have no therapists, no doctors, no school and can just be our little family of 10. Unfortunately it always goes over better in my head than in real life. One of the reasons is in my head there is no sound haha. 

Two of our kids have RAD, reactive Attachment Disorder, so any kind of change in their regularly scheduled programming really messes with them. So insert 2 week school and therapy break mixed with family coming in a tree in our livingroom and lots going on.  The first week home Judah decided he didn't know any English at all and screamed every time I came near him. That was fun (Insert sarcasm). If I would say take off your shoes or shoes off he would pick up a toy. But when family came he would charm the pants off of them and even non verbally told them (while I wasn't the) he had to go to the bathroom and actually went in and went on the toilet without going in his pants first. He never does that at home. 

My other child with RAD decides that he will just steal food and poop everywhere. My life is so fun. You totally wish you had my life don't you. :) he is fearful and acts out in horrible ways when things aren't the same. All those issues aside we wanted to do a few things this vacation. We wanted to have a good break. 

For Christmas Santa got the kids a zoo pass to the local zoo. So we decided to head to the zoo. It was Misha and Judah's first time at a zoo ever. It was a little cold for us but everyone had a good time. 

We also went to Six Flags. Took the entire family and had a great day together. Judah finally got his wheelchair so we were able to keep him safe while out and about. The whole family minus me who had a bout with the stomach bug, I will spare you the details, went to Dinosaur Valley. The kids love it there. They can hike and play and look at dinosaur fossils and foot prints. It's a great place to go. 

The oldest two girls went to the shooting range with me and their dad and grandpap. They had a great time. 

The older boys go back to school Monday and I'm hoping to do one more fun thing before they go back. 

Ashes and S#%!

Oh AJ.

Be blessed

New year new blog

Recently I have taken some time off from writing a blog. I can't say I have missed it, but I do believe I should be writing again. My life is crazy but blessed. It has been 18 months since we brought our last two children home. "Last" being the operative word... Or should I say subjective word, lol. No, we have no plans of adopting again but God is in charge of that not us. I don't scrap book and I don't have photo albums or keep baby books so my blog is really the only way my family can look back and see what has happened. Plus my daughter AJ is way too funny not to write about. I could write a blog solely on the stuff that comes out of her mouth haha. 

I don't know how often I will post but it's time again, I am ready. 

Be blessed