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Tuesday, May 26, 2015

Answered Prayers!

I just have to sing it from the rooftops I'm so excited...

Madi's eye is completely normal again!  No more double vision and no more blurred vision!  YEAH!

She is still a little sore at her incision site but other than that you would never know this girl just had shunt surgery and was in the ICU!  She's back to her normal spunky self and I am so thankful!

Thank you for your prayers, they were answered!

Just for proof of how good she is doing, here's a random puppet show she made up tonight.  Just for the record David doesn't call me doo-doo butt, but it got a lot of laughts out of Conner......

video
 

Sunday, May 24, 2015

Home from Madi's Shunt Revision

For those of you who are friends with us on Facebook, you probably saw that Madi was in the hospital for a shunt revision.  We are happy to say that we are home and she is doing well!

Last week Madi had a headache for about 3 days in a row.  I would give her motrin (when she would let me ;)) and it seemed to come and go, but was mostly consistent over those days.  We were planning on going to my parent's cabin in Flagstaff on Friday and I didn't want to take her up if she had a problem going on so I put a call in to her neurosurgeon.  After waiting a bit I decided it was probably best to just head down so I put her in the car and started driving.  When we were almost to Phoenix Children's Hospital (PCH) the neurosurgeon's assistant called me back and told me that it likely wasn't shunt if the headache was coming and going and there were no other symptoms.  They said to go ahead and go to Flag and just watch her very carefully and take her to the Flagstaff hospital and call them if she progressed.  I contemplated taking her in anyway but decided to just keep a close eye on her.  She did pretty well the rest of the day but she had a rough night that night and was waking up a lot so I had her cuddling in bed with me.  When she woke up I noticed her left eye was turning in.  I held up one finger and asked her how many fingers I was holding up and she said two.  I knew what that meant so off to the ER in Flagstaff we went.  The doctor in the ER called PCH and they said it would be best for us to get there.  The doctor contemplated if he should helicopter us over or have us drive, and decided since she was stable we should just leave Flag and drive straight there.  Madi had thrown up a few times by then but was still feeling still and was in pretty good spirits considering. 

 
 
It took us a few hours to get to PCH but Madi did well in the car.  She threw up once and was confused about seeing double but was a trooper.  When we got to PCH we got settled in to the ER.  They got Madi an eye patch so that she could stop seeing double and she was super excited about that.  They ordered a one bang MRI and shunt series and we got in pretty quickly.  They let me go in the MRI machine with her and she did awesome.  After the MRI we were taking x-rays and David told me that they had already reviewed her MRI and it was abnormal and her shunt was indeed failing so they were taking us straight to surgery and he had already signed the release paperwork.  Dr. Shafron, our neurosurgeon, wasn't on that day, so Dr. Adleson met us at our ER room and walked us over to pre-op. 
 
 
 
The kiddos and David waited in the waiting room and I went in to talk with the anesthesiologist and do the pre-op stuff.  He agreed to let me go back and sing to her while she fell asleep, which I really appreciated.  She had fallen asleep during our walk over and woke up confused when the mask was going on her so I was very thankful I could be there to tell her what was happening and sing to her.  They were able to get the IV in her foot after she was already asleep, so that was awesome too!  After surgery prep the surgery itself only took about an hour.  When Dr. Adelson got in there he discovered that the shunt itself was functioning well.  The tubing, however, had disconnected itself.  Basically the shunt was pulling the cerebral spinal fluid through it but it was just accumulating underneath it instead of going down to her abdomen to get reabsorbed.  He left the top part of her shunt in tact, since he had tested it and it was functioning well, and only had to change the tubing and re-connect it.  This meant she only needed one incision; yeah!!  He also was able to go in through her old shunt scar.
 
During surgery I had missed a few calls from the doctor in Flagstaff so while I was waiting to see Madi I called the doctor back.  He said he was worried about Madi and was afraid he made the wrong choice by not flighting her to PCH to transfer her.  I assured him she had done ok in the car and that she was safely through surgery.
 
After surgery they didn't let me back right away, which I wasn't very happy about.  They had wanted to make sure she woke up ok first since she was intubated.  When the woke her up, though, she had woken up kicking and screaming, like I had told them she would (she doesn't wake up well from anesthesia), and was trying to rip out her IV, had already popped a few of the staples holding in the guaze on her head, and was trying to hit nurses so they had to sedate her quickly.  They let me back and when she woke up again, she was doing the same things, so they got an IV med started to keep her calmer and partially sedated and I helped keep her hands away from her surgery site and IV while we waited for the meds to kick in.  Because she was so cranky and trying to push me away I kissed her hands and that was enough to keep her pushing me away and keep her hands away from anything important.  The meds kicked in  and she was able to rest.  Once she woke up she was doing much better so they were able to cut the sedation amount in half and then not too long after they were able to turn it off all together.  She also finally got water which made her very happy.  We watched TV for a bit and then tried to sleep.  They had her neuro checks set for hourly, though, so we didn't get much sleep (especially me since they had to wake me up in between her hour checks to ask me questions).  Her nurse was really sweet though and tried to let her sleep as much as he could.  At 2 am she woke up really hungry and wanting gluten-free pizza.  That wasn't possible so her nurse offered to go down to the vending machine and get snacks for her.  We decided that if he sat with Madi I would head down since I knew what was ok for her to eat with her food allergies.  I found a ham sandwich and took off the bread and cheese and she happily ate the ham.  She also had a bite of granola bar as well and watched a little TV.  She slept on and off a little more after that in between her neuro checks but was up for good at 5:30.  We watched some movies and vegged and then at 7 am I was able to order her some gluten-free pasta and she was pretty darn happy about that.  My dad came and sat with her around 8:30 so I could grab coffee and oatmeal and I was pretty darn happy about that.  Next David and the kiddos came to visit and she was really happy to see them.  They had left after her surgery because she was so upset and it was upsetting Conner and Ramya.  We  had felt it was best for them to head home, but she sure missed them and told me many times!
 
 
 
We did another one bang MRI and it showed that her ventricles had indeed decreased so they said as long as I was comfortable with it, Madi could go home.  Her shunt site was sore, of course, but other than that she was doing great so we agreed to be discharged.  She has complained a few times about her shunt site hurting but other than that she really is doing wonderfully.  Her eye is still turned in and she is still seeing double but it's looking much better.  They are hopeful that it will correct itself, but if not, we will see a specialist about it.  Please join us in praying that it goes back to normal on it's on soon and that it doesn't cause any long-term issues.  Please also join us in praying that her shunt stays happy and infection free.  She got 3 IV dosages of antibiotics in the hospital so hopefully that will keep her from developing an infection.  Since her shunt was infected once as a baby though I always worry about it.  Please also be praying that she rests well tonight and can catch up on sleep. 
 
Thank you so much for praying for our sweet girl and for all of the calls and texts to check in on her.  We appreciate you!  I'm so thankful she only needed a partial revision and is already feeling better!  It's a miracle!
 
Oh, and a big "thank you" to our friend, Annette, who brought us a yummy dinner so we could relax tonight.  It was VERY much appreciated!
 
 


Tuesday, May 12, 2015

We Let the Cat out of the Bag... With Video!

Today we decided it was the right time to tell Ramya who we were adopting from India.  She had told us a few times she was nervous about getting a new sister, and now that we have our NOC approval, there is a very good chance our adoption will go through.  Our adoption counselor thinks we will get to travel within the next 4 or 5 months to bring *D* home.  We thought it was time to share with her specifically who we are adopting.  She's pretty excited!!!  Here's a video of her reaction....





Wednesday, May 6, 2015

We Need a Big 'Ol Van

Our adoption counselor thinks we are about 4-6 months out from being able to travel to bring D home (yeah!!!).  As of right now, though, we don't have a vehicle big enough for her and a wheelchair for her.  Our mini van just simply will not fit 3 chairs, and it's important that our girls are still in their booster seats until they get a little bigger (versus getting a van where they sit in their chairs in the car), especially D. 

We aren't in a place to be able to get a big accessible van (a big ford van or Mercedes sprinter are my dream car :)), but we do really need a big cheap van.  Something with good miles and lots of room, but very affordable.

If you happen to come across a great deal on an older used van with good miles, please let us know!  Thank you!

Friday, April 24, 2015

Neuro, Uro, and Thankful for a Crappy Day

Whew, what a week!

I know I say that often, but it just seems to describe this week so well.

Tuesday we had an appointment with our neurosurgeon, Dr. Shafron, as a follow up from Madi's last seizure.  The ER had mentioned Madi's right ventricles were slightly larger.  I told them that she is shunted on the left so they always are, but they wanted me to follow up with neuro and just make sure there were no changes.  Dr. Shafron compared the images from the ER to her last images and her ventricle size looked identical.  Yeah for a well-functioning shunt!  I remember when she was tiny and she was flying through shunts.  I felt like that would be our life forever.  It's now been over 6 years with this same shunt!  6 years!!!!!

Thursday the girls had appointments for renal ultrasounds and a follow-up with our urologist, Dr. Zuniga.  They had a really hard time finding Madi's left kidney, and they aren't exactly sure they even found it.  Madi has a super kidney (her right one) that performs as well as 2 kidneys.  Her left kidney doesn't really work at all, though.  They think it may be shrinking/shriveling, which they said is typical.  Her right kidney continues to look great, though, so we are thankful for that.  Her bladder is also looking good.  Ramya's tests all came back great as well, so that was good news!  We eventually need to consider surgery for the girls to help with urinary and bowel things, but I told the doctor I would prefer to wait until after our adoption goes through and we re-settle as a family since both girls are doing well (they just can't get out of diapers/pull-ups at this point, which I know eventually they will want to do).  He agreed that was a good plan, so for now we wait.  He also answered a few "boy" questions I had about Conner and put my mind at ease, which was very much appreciated.

Now on to our crappy day that I am actually quite thankful for....

Today we had homeschool co-op and we had a blast like always.  Conner takes Mini-Mozart, which is an acting type class for kids.  He also takes What's Bugging You, which is a class that teaches them about, well, you guessed it, bugs.  He really loves both!  I teach the class the girls are in and usually pick a topic to learn about and then we have activity centers to work through related to the topic.  We also have music and PE class during that time.  We learned about polar animals and did a lot of fun activities.  The girls really enjoyed it.  After we left and got to the car is when the fun started.  Sweet Madi unlocked her wheels (she's very independent and knows how to lock and unlock them and usually uses them appropriately), unstrapped herself, and reached over to grab something.  That's when her wheelchair went flying backwards in to the parking lot and she went flying forwards, belly first, on to the asphalt.  She was scared but somehow was completely unscathed.  Not even a scratch!  There were many tears shed, but she told me she was crying because she was scared, not because she was hurt.  Thank God!  I'm so glad she wasn't hurt.  We talked about why we need to make a different choice next time and I know she learned a good lesson.

Next we had an appointment with our naturopathic doctor for a blood draw so we started to head that way.  Before I get to that part, though, here's a little back-story.....

Unfortunately this blood draw had been a really frustrating situation for all of us.  A few weeks ago the neurologist asked me to get a draw for her to check her keppra levels.  Since we had to do the draw anyhow and she wasn't due for any other labs, we decided to check anything we could and he also included folate levels, b 12, amino acids, thyroid, homocystine, and a few more.  I made an appointment at our pediatrician's office since they do draws all the time and I figured they would be the best with kids.  They did a great job on the draw and got her on the first try and were done quickly.  Unfortunately, though, somehow when they were transferring the neurologist's orders over to their paperwork, they left off the most important test... her keppra levels.  When I got the call that her results were ready I sent David by to get them.  When he got home I realized that the level was missing but the office was already closed and I couldn't call.  I called first thing Monday and after many conversations with our neurologist's nurse, Sonora Quest Labs, and our pediatrician's office, we realized what the error was but it was too late to do another test from that sample.  I had the neurologist write up another test form for us, including white blood cell count this time as well, and made an appointment with our naturopathic doctor this time for the draw so that I could also get a food allergy panel run at the same time.  I had tried to have it run with the first round of blood tests, but because it was an outside lab they wouldn't do it for me.  I figured we would at least get to kill two birds with one stone.  Now back to my previous story...

On the way to our naturopathic doctor's office we were all getting hungry and decided to stop at Whole Foods for lunch.  It was raining, though, and the traffic wasn't great.  As I was exiting the ramp I almost got rear-ended.  Almost.  I am so, so thankful for that almost in there.  God really protected us!  While we were shopping for our lunch I got a call that our new physical therapist (such a long story there but Tami, our amazing PT, was no longer contracted with our insurance so we had to switch.  We found Kelly after a few months of self-pay appointments with Tami and lots of phone calls.  We've had her a few months and really loved her) was no longer with the company and they had no other therapists for us at this time.  GAH!  It took me so long to find her and she was great with the girls.  We are so so bummed to be losing her, especially so soon.  I texted her to see if we can follow her to her next office but she's not sure at this time where she's headed.  Here's the good news, though.  The last few times Tami had worked with the girls she decided to bill our secondary, fully expecting them to deny her, since she was no longer contracted with them.  Instead, they paid!  We aren't sure if this will last, but for now, we can continue to work with Tami until we find another PT.  Even though we are bummed it's amazing how God has worked out all the details.  I also ran in to two friends at Whole Foods, so that helped soften the blow.  A hug from a friend just goes a long way!

After we got our lunch we headed to the office.  Dr. Vitaro was great with Madi, but unfortunately he couldn't get a draw on the first try and there was just no way she was letting him try again. She was pretty upset.  There were more tears shed.  The doctor felt really bad, and I felt bad that he felt bad.  I had just got done telling him how I was really frustrated at the other office for messing up her labs, but new it was a mistake and was trying not to be upset, and then he couldn't get a draw from her.  It was just a bummer.  I decided to just forget the allergy test for now and make an appointment to go back to the pediatrician's office for the draw since she can be a hard poke and they can get her on the first try.  That appointment is Monday, so I am praying like mad that Madi will do ok during the draw.  She was upset during the last one , which she also thought would be the last one, and I really pray she doesn't have anxiety about the appointment and that it goes smoothly.  Hey, third time's the charm, right??? 

On the way home Ramya apparently still had some gluten-free pizza crust left (that girl can really hold on to food forever!!) and gave it to Madi.  We were on the freeway and I heard her start to choke.  She cleared it quickly (thank God) but she started making her "I'm going to puke" face that she gets any time she gags.  I pulled off the road quickly to give her water and help her but she was fine thankfully.  Again, I am SO thankful for protection for her.  I know I sound like a broken record, but really, I am! 

Whew!!  Once we got home the rest of the evening went well.  We went out to dinner with David's grandparents to celebrate his grandfather's birthday and enjoyed spending time with them.  After the kiddos went to bed David and I finished watching a movie together and it was nice to just relax.  I'm thankful that tomorrow is a new day and I'm looking forward to Madi and Ramya's dance class and then working a bit in our garden.  We also have a family movie and some relaxing time planned. 

Though this week was busy with appointments, therapy, and homeschool, we had lots of fun times in between that I am thankful for.  I think these pictures speak for themselves and just how blessed we are...

(Relaxing and eating lunch after our urology appointment Thursday.  It was a BEAUTIFUL day out!)
 
 
Working on our garden...
 
 
Dressing up for silly photos at the Ice Cream Social at Madi's old preschool, Stepping Stones...
 
 
 
 
Relaxing foot soaks in momma's foot tub.  Madi said she couldn't feel it but was pretty sure it felt amazing.  She cracks me up!  She did also put her hands in it so she could feel the warm bubbles.
 
 

 

Wednesday, April 22, 2015

Woooo Hooooo Our NOC is Here

I got an e-mail from our adoption counselor today with our NOC!  Yeah!  The NOC is a certificate they issue that states they have no objection to us adopting D specifically.  Next up is court.  Court can take quite a while, especially considering they take a few months off in the summer, so we are praying our paperwork moves through at lightening speed.  Please join us in praying for this!  After court we will apply for her passport, which can take 1 or 2 months, and then off to India!  Exciting!!

 

Sunday, April 19, 2015

Wearing a Special Needs Child

David and I have always appreciated being able to wear our babies and keep them close.  In order to keep an active lifestyle with our girls, though, it's still very important to us to be able to carry them around.  The problem, of course, is that as they get bigger the girls get, the harder it is to find a solution that works for us.

When Conner and Madi were tiny, I loved a good baby wrap.  Once my kiddos got a little bigger I really loved my Beco and Ergo carriers.  After Madi got even a little bigger and we adopted Ramya, we needed something even bigger yet.  We got Babyhawk O' Snap carriers in the toddler body size and really liked them.  It wasn't too long though before they outgrew those as well.  The carrier we now use is the Kindercarry in the Preschool size.  This is a really nicely padded carrier that is also nice and wide to keep their legs and hips in proper alignment.  It also has a nice long body.  Once the gals outgrow this I'm not sure what we will get next, but we are hopeful these will last a while longer.  Here are a few action shots with us out hiking.  Our backs didn't hurt afterwards, but our booties sure did hiking up the hill!