A Few Quick Updates Because SO Much is Happening

I just realized it's been quite a while since I have updated on how life is going.  There's a lot to share, so I think I'll break it down by kiddo to make it easier.  

Madi:

On Monday Madi saw a new neurologist in Tucson.  So far I think I like him, we shall see.  He wants to do a sleep-deprived EEG and see how her neurons are firing and all of that good stuff.  Her appointment is in in May and the goal is to limit her sleep as much as we can for one day (4-5 hours if possible) so they can get the best EEG readings.  She can't have caffeine before the test, but you can bet I'll have quite a bit!!  After the test he wants to discuss possibly changing her medication or combining two medications to try and get her seizures more under control.  She doesn't have them often, but when she does they are big and require a lot of intervention.  

Madi and Ramya's new DDD coordinator came out today and we really liked her.  She had read our blog and was excited to meet the girls.  She gave me a list of occupational, physical, and speech therapists in Tucson so that I can start calling around and find services for both girls.  That's my next job over the next few weeks.  

Other than that, Madi has been talking about wanting to be on stage again, so I need to start looking for a place in Tucson that offers dance or plays she can participate in.


Ramya:

A friend who was adopting from India at the same time we were shared that her daughter tested positive for E Pylori.  I read about it and decided I should have Deena and Ramya tested.  I asked their pediatrician if we could run the test and he agreed.  Deena's test came back negative, but Ramya's came back positive.  The doctor said treating it likely won't make any short-term changes, but that we should treat it to make sure she doesn't get ulcers or have issues in the future.  Reading online I found that it's not usually symptomatic, however, when it is the symptoms (according to Dr. Google ;)) can include:

• excessive burping
• feeling bloated
• nasea or vomiting
• lack of appetite or anorexia
• unexplained weight loss

It may be nothing, but I'm hoping treating her may help bring up her appetite and weight.  We have had swallow studies, feeding evaluations, parasite tests, etc... and never came back with any answers as to why she may struggling with having a desire to eat and poor weight gain.  Everyone tells me it is emotional, which is one reason why we were having attachment therapy.  I'm praying that this may may provide some answers for us and help make her healthier.  The initial treatment would be 4 weeks and then we would re-test and see how she is doing.

Deena:

A few weeks back Deena had her first "incident" since being home.  The kiddos were riding their plasma cars and Ramya slammed in to Deena, causing Deena's leg to hit the wall.  She started crying and telling me "mom, so much pain!".  It was so sad!  I splinted her right away and then she felt a ton better.  After that her leg only hurt if it moved in a funny way, and she really didn't complain about it any more.  I took her back to the orthopedic surgeon who thinks it may been a new break.  Looking at her x-ray from December in India, though, she had a break in the spot already that she had come home with.  The pediatrician thinks she just re-injured the existing break, but our next follow up with the orthopedic surgeon isn't until next week so I am not sure his opinion yet.  He wasn't looking at the old x-ray to compare the new x-ray to, so I plan to bring that for him.  Either way she said it doesn't hurt anymore and she has been putting weight on it again, so that's great!

Last week we drove in to Phoenix and Deena had her first appointment with our pediatrician.  He had told us she would always be in pain, and was pleasantly surprised to see her so happy and doing well.  She charmed him with her silliness and I could tell he thought she was pretty special (which of course she is!).  

Deena sees our endocrinologist later this month so we can start her infusions.  We are also starting the discussion of rodding surgery and we are praying about which doctor to use for the surgery and the best type of surgery for her.  

Deena still is not on our insurance.  I was told we were approved and in the final stages of rate determination, and then haven't heard back.  I need to call again and hope she will be on soon.  I also applied for CRS (children's rehabilitative services) for her to help with doctor's bills in the meantime.  Hopefully we will hear back from both soon.  The orthopedic surgeon wrote her a prescription for a wheelchair.  We do not want to start the process, though, until she is on our insurance.  We saved Madi's last wheelchair for Deena, though, so once we have a big enough vehicle, she can start using that while we wait.

Conner:

Poor Conner was sick last weekend; the sickest I have every seen him.  I started dosing him up with elderberry, vitamin C, zinc, and garlic.  He threw up twice on Saturday and didn't feel well.  He slept most of the day on Sunday, had a low-grade fever, and kept complaining of pressure behind his eyes.  I planned to take him to the pediatrician on Monday but he woke up his normal energetic self and I was so thankful! 

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In other news, Athletes Helping Athletes not only gifted Madi and Ramya AMAZING hand cycles, but they also asked to feature them in their promotional materials this year.  Of course we said yes!  Monday we had their program manager, photographer, videographer, and assistants here.  It was SO much fun!!  More to come on that later, though, because I really wanted to dedicate an entire post to our day and their organization.  

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Our house finally sold and closed this Thursday.  We both have mixed emotions about the sale, but are thankful that we are all in one place now and that all of our "stuff" is finally in one place as well.  It was stressful having it pending, going back and forth so much between Tucson and Phoenix, and then packing it up with 4 kids in tow, so we are glad to move past that phase of our lives.

 When we initially put the house up for sale we had dreams of renting for a while, saving, and then being able to build the girls an accessible house.  Plans changed when David's boss asked us to relocate, our adoption finally went through, and the house took longer to sell than anticipated.  Now we are here in Tucson and both our house and lot are sold.  We are working hard on trusting that God has a plan, though, and are looking forward to watching it unfold.  David is enjoying working closely with his boss and feels like it was a good move for him, which I am thankful for.  We are also VERY excited to be able to get a bigger vehicle so that Deena can start using a wheelchair.  I think the plan right now is to look for a conversion van with double opening doors that will fit all the kiddos and the three chairs.  We are hoping to find something soon!

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I think those are all of the "big" updates for now.  Deena is such a sweet girl and is adjusting remarkably well.  She went with David to pick up coffee the other day, which was her first trip away without momma.  She was very proud of herself and her time with David.  It was so sweet!  She kept talking about how funny daddy is, and all the silly animal noises he makes.  

We are blessed indeed!!

Seizures, Sickies, A Mini Hospital Stay, X-Rays, CT-Scans, Orthopedic Surgeons, OH MY! Oh Wait! Did I Mention Maybe a UTI?

Whew.

I know, that's quite the title for this blog post, but it's been quite a few crazy days!

Where to start???

Wednesday we went out for our "big" shopping trip.  We found out Madi is sensitive to peanuts, almonds, eggs, corn, and wheat (likely dairy too, but she didn't have enough in her system for it to show up).  We knew about gluten and dairy, but the rest are new (and were tested because of her big egg fiasco).  We had to re-do the pantry, again, to make it allergen-friendly for her.  That meant sunflower nut butter (instead of almond or peanut), coconut milk (instead of almond), rice noodles (instead of quinoa/corn blend), etc...  I was also very low on groceries as we've just been kind of sliding by with our shopping and needed to stock up.  That was a $300 shopping trip right there.  Whew.  Yes.  $300.  I've never spent that kind of money in a grocery store, ever.  It was insane.  We were blessed with a sprouts gift card by two amazing friends the week before, and let me tell you, it was very much appreciated!  It helped a lot with that trip.  It was such a blessing (thank you friends (you know who you are), we love you guys!!) to have!!

I got a call from a friend as we were leaving the grocery store.  She needed to take her husband in to the hospital for heart failure (Thank God he is doing ok now.  It looks as though a virus settled in to his heart and was causing issues, but is resolving).  I ran by to grab her two kiddos and brought them back to our house.  Next, my friends moving to India the next day came by for dinner.  It was a crazy last dinner with them, as there were 7 kiddos at that point in time (my 3, their 2, and my friend's 2), but we enjoyed seeing them one last time before they left for India.  I got my 3 ready for bed and laid them down with David and sat with/rocked the 2 we were watching so that they would rest and be happy until their momma could make it home. They are sweet kiddos and did a great job while their mom was away.  I dropped them off at around 11:30, got home around 12:45 (we chatted a bit), then crashed in to bed.

Thursday I woke up and got Conner, Ramya, and Madi ready for a doctor's appointment we had at 10:00 am.  Ramya was seeing Dr. Segal, our orthopedic surgeon, for a check-up and to get a prescription for leg braces.  I got the three of them pottied, fed, dressed, and in the car, and we headed for Phoenix Children's Hospital (PCH).  We checked in, waited, got in the room, waited a bit more, then saw Dr. Segal.  He is a wonderful doctor and we really love him.  He heard clicking in Ramya's left hip and set us for x-rays.  Conner and Madi couldn't go in the x-ray room, so I took Ramya in while the secretary played with Conner and Madi.  She made them glove-balloons and they drew faces on them.  They had a blast!  We got back to the room and by then everyone was getting ansy.  We waited a bit more for the doctor to come back, and he walked in to a room of monkeys when he did!  He gave Conner a game on his phone, sat Madi on his lap so she could scribble all over his notes, and finished his exam (like I said, he's an amazing doctor!).  We were finally finished at about 12:45 pm.  Dr. Segal wrote us a prescription for occupational therapy, physical therapy, speech therapy (just in case), and KAFOs (leg braces that go up to the thighs).  He thinks Ramya will be a functional walker, and is hopeful we can go down to just AFOs (ankle braces) in the future.  He did say, though, that her left hip is likely out and will need surgery.  The x-ray showed that the front of the hip was mostly in, but it seemed the back of the hip was not.  We'll need more x-rays in the future to better asses this.  Madi's right hip is out, but he doesn't want to operate as she is a part-time walker.  Because he sees Ramya walking more, though, and causing more strain to that joint, he thinks she will need surgery.  Sigh.  He thankfully wants to wait until she's been here longer and is better adjusted, so at least that is good news.  At this point, we had missed Madi's occupational therapy, so we just went to the cafeteria to eat and relax.  The second we pull up in the parking lot all the kids get excited (even Ramya now), becuase they know PCH has scooby doo fruit snacks full of all kinds of nasty junk that mom wouldn't normally let them have.  It's the one time they get them, and they all love them, so we never leave the hospital without them.  Hey, if you have to go to the hospital for appointments all the time, there has to be a little perk, right?!?!?!?

Ramya's photo of Madi's glove balloon....

 

 



This morning Madi woke up early at 7:05.  She was throwing up and dry heaving, but was responding and seeming ok other than that.  She wasn't stopping the dry heaving, though, and then started staring off and getting slow to respond.  My heart skipped a beat.  Then I noticed her lower half started convulsing in a rhythmic pattern.  I woke David up, got her rescue meds, and gave her those (at about 7:20).  Madi's seizures don't self-resolve and just continue to get more involved, so they have to be stopped ASAP with a rescue med.  The problem, though, is that it's sometimes hard to tell if it's a seizure or just regular old sickies.  She normally falls asleep right after I give the meds, but this time she didn't.  She was agitated and kept telling me she needed to pee.  She finally fell asleep, but woke up very unhappy (which is not like her).  She kept saying her head hurt.  She'd hold it and just cry.  It broke my heart.  She started projectile vomiting, too.  She was lethargic and would wake up for a bit, sleep for a bit, but was just hurting and not happy whenever she was awake.  She's never complained of a headache before, and she's never acted like that after a seizure before, so we were worried about her shunt.  We decided to take her in to PCH.  Because they are on RSV restrictions still, my mom drove so I could sit next to Madi, and David stayed with Conner and Ramya.  Poor Conner was crying and upset at me leaving, and I felt awful leaving Ramya when we are still working on attachment so much.  Thankfully David was there for them, but it was not fun.  Madi projectile vomited in the car on the way again and was still saying her head hurt.  We got checked in at PCH and then the ordred a CT-scan and x-ray series.  I also told them they probably wanted to check her urine and did a clean cath sample for them.  We waited quite a bit (such is hospital life) and then it was time to go get the scans.  Right about then, Madi perked up and started acting like her normal self.  We went for the scans and then waited for the doctor to come talk to us.  While we waited we chatted with Conner and Ramya on facetime.  They were relieved to see us!  After we chatted for a bit, the doctor came in and told us her scans all came back fine.  He didn't think it was shunt related (Thank God!  I know it's crazy to wish a sickness on your kiddo, but I always pray she is "just sick" and it's not shunt related, because shunt issues equal surgery!).  He did, however, see a lot of white blood cells in her urine, indicating she likely has a UTI.  They couldn't get ahold of urology to check her sample, so they sent me home with a prescription for antibiotics and with instructions to fill it if urology felt it was necessary (I will call Dr. Zuniga on Monday and have him check it all out).  The doctor said the UTI could be to blame for all of the symptoms we saw that day.  I don't think it was related to the headache and vomiting.  I think that was likely due to the rescue meds.  I suppose you never know, though.  I do know if she has a UTI that would lower her seizure threshold, so that could help explain the seizure.  Madi acted like her normal happy self once we were home.  Conner and Ramya were thrilled to see us and Ramya would not let me put her down the rest of the day.  David said she cried and asked for me a few times while I was gone.  This made me feel very sad, but at the same time, I'm glad she is missing me.  I would think it would mean she's at least partially attached to me if she is sad I'm gone.  I'm glad she's now gotten to see, though, that momma comes back.  I'm also thankful she was able to be with David, as I'm sure that helped their bonding.

Sleeping angel on momma...

 

 



We finally got dinner (takeout... I hadn't had breakfast or lunch, and had finally gotten half a sandwich in the late afternoon but was still very hungry!) and got all the kids in bed, and then Madi puked again.  It was a lot.  It went on me, on the pillow, and on the bed, so we changed all of the sheets and the waterproof mattress cover, and I changed my clothes.  We got all the kids back in bed and settled again, and then finally off to sleep.  I'm beat, so I am headed to bed as well.  The house is a mess.  Their are dishes in the sink.  I need a shower.  But for right now, I don't care.  Sleep is going to come first.  I am VERY thankful that Madi's shunt looks good and that we were able to come home today.  God is really watching over my little gal!

I pray everyone has a blessed night and gets lots of rest (me included)!!!