Thank God We Have It!!

WE GOT HER MEDICATION!!!!!

(insert HUGE sigh of relief here....)


Whew. 

Yesterday our neurologist called to check on Madi and see if she was able to take the pills he prescribed.  We had tried many times, but unfortunately, she just couldn't do it.  She tried really hard, though, and I am proud of her for that.  We decided to do one week of generic, even though it bothers her system, because going without just isn't an option.  The generic didn't get called in, though, so I continued to use the emergency fill of brand-name I had, which was getting very low.  This morning I called the neurologist office to have the generic sent in and got a call back about an hour later to let me know that they had just checked with both of our insurances and we could officially get our brand-name now.  YEAH!  I called our pharmacy and they were able to run it through.  I was SO relieved!  I think I thanked both the neurologist office and Walmart about 10 times each :).

Though it always stinks to have the stress of fighting with insurance, the extra calls, and the worry about your kiddo, I am so thankful for people in our lives who love Madi and will work so hard to get what she needs.  I'm thankful that the neurologist cares about her enough to take time out of his insanely busy schedule to call us himself and check on her, making sure we got a solution.  I'm thankful for his staff who didn't give up and spent a ton of time calling insurance and helping us resolve the issue.  I'm thankful for a pharmacy where they know her by name and always go above and beyond for her.  They spent at least an hour on the phone helping us as well.  I'm also thankful for our friends and family who encouraged us and prayed for us while we tried so hard to get her medication.  One thing is for sure; we are blessed beyond measure!


P.S.  I asked if I could crush the  medication and give it in pudding or juice or something and he said no, absolutely do not crush it and give it to her.  I'm glad I asked first!


 

New HFKOs, Brand-Name Keppra, and a Flooded Car.... YEAH

Today was quite the day!

It started with me waking up to David describing how he drove to get an iced coffee but ended up stranded in a parking lot instead.  It was pouring down rain and had been for hours.  There was major flooding and the roads where terrible.  He was in the grocery store parking lot, but couldn't see well because it was 4:30 am and dark, and accidently went into a deep drainage area in the parking lot.  His car stalled.  There was smoke.  He couldn't get it to start back up.  He tried to push it by himself but it wasn't budging, so he locked it up, turned on his hazard lights, left it there, and walked home.  It was not in a parking spot and was kind of in the middle of the driving lane, but there was nothing else he could do.  My sweet hubby didn't want to make me come get him at 4:30 in the morning, since I would have to drag the kids out of bed, and we live pretty close to the store, so he just walked.  I am not sure why he didn't call my dad, but apparently he enjoyed the walk, and as an added bonus, he got a shower too!  After that he was crazy busy at work and couldn't leave while I was still there, and then we had to leave for an appointment downtown, so it sat for a while.  We were afraid it was going to get towed so later in the day our very kind neighbor, Jerry, took David to his car and helped him push it out of the way and in to a parking spot.  After I got home we called a tow truck to take it to our mechanic.  Unfortunately water got in the motor so we are praying there is minimal damage.

 

 

On the plus side, Conner loved "building dams" after the rain died down.

 



 

 

Today both girls had an appointment with Ron at Hanger to get their HKFOs fitting them.  The downtown area was flooded, and of course that is where we were headed, so my dad came with us to make sure we were safe.  I am pretty spoiled with an amazing dad who loves us very much!!  It was also nice to have an extra set of hands since I had so much cargo to haul.  It turns out Madi needed brand new HKFOs so she got casted for them.  We should get the new HKFOs in about a week.  She wasn't sure if she wanted "a zillion Scooby-Doo's" or just plain pink, but decided on just plain pink.  She did a great job being patient while Ron casted her.

 

 

(Ron was a great sport and let Madi measure him :))

 

(Conner was a great sport as well and baby-sat Madi's new tiger for her while she got casted (yes, that is a glove she drew on ;))

 

 

 

Next up came Ramya.  The great news is she has GROWN and her HKFOs finally needed an adjustment!  Yeah!  He made them 1/2 inch taller and also widened the back portion a bit.  She did great with waiting as well and we were able to take them home fitting, which was wonderful.

 

 

 

On the way home we stopped at Urban Bakery and the kids got gluten-free vegan donuts.  They had been really good for the appointment, which was a few hours long, so I wanted to surprise them and get them a little treat.  My dad stayed in the car with them and I ran in and picked out a few.  I got my dad a few cupcakes too, because there has to be some perk for helping me wrangle 3 kids.  Ramya didn't want hers (I will never understand how a kid can say no to sweets!  I even got her favorite kind... vanilla with icing), but Conner and Madi gobbled them down very happily. 

 

 

 

 

We were also able to pick up Madi's brand-name Keppra today... YEAH!!  I am really praying this helps with her rashes.  There's some back-story on getting the medication, but it was not too bad!!  On Thursday we headed out to see The Rugrats Live with the kiddos.  I had forgotten my phone but decided not to go back for it because I thought it was too late in the day for calls from the doctor.  Of course I came home and realized I had missed a call from our neurologist at 7:45.  I was bummed!!  I called the next day, Friday, but couldn't get ahold of him.  His nurse said he had made notes in the file stating he had called our pharmacy and they were working towards getting the brand-name keppra approved.  The nurse suggested we talk to the pharmacy to verify.  The pharmacy said they did not have a record of this, but talked to George, the main pharmacist who thankfully loves our kiddos, and always remembers us, and he got right on getting it approved and processed.  He called the neurologist office, called me back when he couldn't get through to ask me the best way to get ahold of our neurologist, called again his office again, and then left a message with Dr. Condie's nurse.  He called me back after that and told me he hadn't been able to reach them but would order the brand-name for Madi anyway and figure the rest out later.  Thankfully the nurse called him back shortly after that and sent him a prescription for brand-name keppra, so he ran it through insurance to make sure he didn't need to call them as well, and then called us back and let us know it was all taken care of and our prescription would be ready Monday.  I'm thankful it all worked out and getting it was relatively painless!!

 

 

Next on this week's to-do list is picking up Ramya's glasses, setting up a hearing evaluation, calling to see where we stand with getting Madi oxygen to use during seizures, getting some blood tests done (the MTHFR mutation test for me, and food (IgG and IgE) for Ramya and Conner), homeschool co-op, OT, PT, and the play Charolette's Web.  Oh, and I am getting a teeth cleaning.  It will all be worth it though because we go out of town next week for vacation... woooo hooo!





 

 

 

 

 

Appointments Galore.... Ophthalmology and Neurology

Last week I brought Ramya to an optometrist/ vision therapy specialist who works with kiddos needing vision therapy, specialized glasses, etc...  Ramya's left eye looked slightly off in the photos we would receive from India, but I hadn't really noticed any problems after she had been home for a short time.  I did notice, though, that she had a hard time at midline  (which can be common with kiddos that have spina bifida), had a hard time with tracking, complained of her eyes bothering her sometimes, and I still wasn't sure her glasses prescription was correct.  Tami, our PT, suggested we see Dr. Glonek.  Dr. Glonek was very thorough and spent over an hour with her.  He said that her eyes are crossing when she is trying to focus on something (and now that he said that, I can't stop noticing it... he is totally right!!).  He said he doesn't think vision therapy will help her right now because it's been happening for so long and her muscles have now grown differently.  At this point he thinks there is a good chance she might need an eye surgery.  He wants to try and re-train the muscles first, before we talk about surgery, but he's not sure that will do the trick.  She is a  +0.75 prescription, but he wants to put her in +1.25 to see if over-correcting her will make her muscles work a little more. If that doesn't work,  we will have to see Dr. Cassidy, a surgeon, and then will follow up with Dr. Glonek for vision therapy after the surgery.  We ordered new glasses and he wants to see her after she has been wearing them a month to see what kind of progress she is making.  I am praying that the change in glasses will help and that she will not need another surgery.  I also had him take a quick peek at Madi and Conner, and it seems they may be having some problems too, so I will have them checked out more thoroughly as well when we go pick up Ramya's glasses. 

Orphanage photos...

 

 

 

Now...

 

 

 

 

Today I took Madi down to PCH for an appointment with Dr. Condie, her neurologist.  He didn't get to see her last time we were admitted to PCH, and though they said we didn't need to follow up with him until our next scheduled appointment, I had some questions I wanted to discuss.  His wife is about to have a baby so getting an appointment with him was tricky, but the squeezed us in and I was very thankful!  He also spent about 45 minutes with us so that we could really talk things through, and it always means a lot to me when a doctor is willing to take that kind of time with us. 

 

I told Dr. Condie that I would like to have oxygen at home to put on Madi when she is seizing.  The clonazepam, her rescue medicine, never seems to be enough.  The turning point for getting her to stop seizing seems to be once the paramedics put oxygen on her.  I told him I want to be able to pop a clonazepam in her cheek and then put an oxygen mask on her right away in hopes that we can stop the seizures quicker and bypass the need for the extra doses of clonazepam, the paramedics, and a trip to the hospital. Madi has really only had 4 seizures this year, which is wonderful, but they were very long ones (they can easily last between 20-45 minutes at least!).  We agreed that the quantity of seizures is no the big issue, it is the duration that is such a problem.  He agrees that the oxygen would be a good idea for her and said it may take a little time to get it, as it's not a regular prescription, but that he thinks he can get it for us.  We left her Keppra dosage the same and are going to try the oxygen for now and see how it goes.  If this doesn't help, she may need a second seizure medication at night before bed (the kepra is twice a day). 

 

Another issue I talked with him about is rashes Madi has had around her mouth.  She gets the rashes any time she gets a little gluten or dairy, but even being very, very careful with her diet (we don't eat many processed foods anyhow, and I cook mostly from scratch), I cannot seem to get the rashes to go away.  I asked if it could be from her Keppra, as we get generic.  He said it very well could be from the generic form of keppra.  With generics, they can change the formula of their suspensions (the medication itself is the same, but what they mix it with can vary) and not notify anyone, so it very well could be that they changed the formula and she is now reacting to something in it.  We are going to try non-generic keppra and see if that takes care of it. 

 

Dr. Condie would like Madi to see an allergist because of her food sensitivities, as well as how she reacts to bug bites (I was telling him I would like to get an Epipen, just in case, because she gets huge welts from bug bites and I worry what a bee sting could do to her).  Today when I brought her in she also had a rash all over her chest, abdomen, armpits, and legs.  I have no idea where the rash came from or why she had it.  He gave us a referral to an allergist that works out of phoenix children's hospital (PCH) and we will make an appointment with her tomorrow.

 

Other than that we don't have any big updates.  We head to California for about a week and a half and will spend 2 days at Disneyland while we are there.  The kiddos are SO excited!!  We have quite a few more appointments to cram in between now and then, so these next few weeks are going to be busy.  We can't wait to go and relax though, and it will all be worth it!!