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Sunday, July 26, 2015

We Are Alive!!

I know things have been really quiet on our blog lately, but we are alive and well!

Unfortunately there is no news on our adoption, which is really the biggest reason why things have been so quiet.  I have a child on the other side of the world that I've only spent a few hours with, but that I love more than anything.  I've advocated and fought for her for over two years now.  No matter what I do, though, I cannot get her home faster.  It stinks.  My heart and mind always feel like they are tugged in two different directions.  Life here happens quickly as we are busy, but Deena is always in my thoughts.  I think about her, pray for her, dream about bringing her home, and then meet the disappointment daily that we are still waiting with no news.  I try to be optimistic and patient, knowing that everything will happen in God's perfect timing, but it is still just plain hard.  Our court date June 16th never happened because after their month and a half summer break there was still no judge.  To this day, there is still no judge.  We need about 3 court dates and are still waiting for our first.  I'm praying it can happen soon and really wish I had the power to speed it up.  I will say, it's a great way to (attempt) to practice patience.  



Other than that we have been enjoying our summer.  We don't take full summers off but do the "extra" fun stuff we run out of time for during the year.  We have studied lots of fun topics like planets and fossils and have also done many fun artsy things.  We also do lots of reading.  We recently went to the Museum of Natural History for the first time and the kiddos really loved it.




At the beginning of the month we participated in the walk-and-bowl for spina bifida with the Spina Bifida Association of Arizona.  It was their first year doing the event and we had a blast!!




We have a pool and have been doing a TON of swimming.  The girls are not yet swimming independently, but they are getting close!  They all love being in the water and it's great therapy for the girls.  Conner got a snorkel, goggles, and flippers a few weeks ago.  He says that he is practicing for Hawaii, though we have no plans to go to Hawaii in the near future :).  We would really love to go there one day though!



The girls both got the HKFOs fine tuned and those are fitting great.  Madi also got her new AFOs to wear when she is in her wheelchair or just relaxing at home.  Our hope is to keep her left foot stretched out a little better to help her with standing in her HKFOs.  She calls them her "pickle braces" because she requested green like a pickle.  She is pretty proud of them and has been tolerating wearing them pretty well!




We all got summer cuts and I also got my hair colored.  The girls LOVE getting their hair cut.  Ramya decided to go shoulder-length and Madi chose to keep hers longer.  They both look adorable!




As I shared in my last post (like a month ago, ha!!!), I had been feeling in a bit of a funk since Madi's last shunt surgery and had decided to do a 7 day juice cleanse.  I successfully did my 7 days and have been drinking a green smoothie for breakfast every morning since then.  I am happy to report that I have a lot more energy and am feeling much better.  I have also been making it my goal to work out daily.  I missed two days over the past 3-ish weeks because I was sick, but other than that I have been sticking to it.  As a mom of kiddos with special needs it can be really hard to make time for yourself, but I also know it's important I keep myself healthy so I can stay strong for my girls.  It helps me manage stress and that's pretty huge!!  

Tonight on the treadmill... not amazing because I am not a runner so I just walk fast on an incline, but hey, it's something!  Every day I am able to do just a little bit more.



I think that's really all there is to report for now.  Please be praying  that a judge will be assigned to the hall in the Bangalore court this week and will hold our first court case promptly.  Please be praying for all of us while we wait, as well as for sweet Deena.  David's grandfather, John, is also very sick and he will be entering hospice tomorrow.  We haven't been able to visit him yet because we have all been sick (especially David who was sicker than I have ever seen him before.  Thankfully he is on the mend and almost completely better now).  Please be praying for him, David's grandmother, and the rest of our family during this time.  Please also be praying for David as he is still struggling to get back in to the swing of things at work.  I know he is very discouraged and it's been really difficult.  He's such a good trader but he's just going through a funk.  Things just really seem to fall apart right before you adopt.  It happened when we adopted Ramya too and it's just not so fun.  We do know we were called to adopt Deena, though, and trust that we will get through the hard times while we wait to bring her home.

Thank you for all of your prayers!

Monday, July 6, 2015

Feelin' Kinda Funky... My Random Thoughts Tonight

Since Madi's latest hospital stay, shunt surgery, and shunt infection scare (no infection thank God!) I've felt like I'm in a bit of a funk.  Stress = eating for me, so I've been craving (and eating) all the bad stuff.  This, in turn, makes me feel bloated and yucky, which in turn makes me feel more funky, and that leads to, you guessed it, more eating.  

I decided I needed to fill my body with nutrients and get out of this funk so I did a 7 day juice cleanse.  Yesterday was the last day of my cleanse but I feel like I have SO much more energy and have decided to have a green smoothie for breakfast every day to start my day off right.  I hope to keep it up!  I've also cut the junk and gone back to whole foods.  I have been working out at home any evening I can and have been making sure to spend time in prayer each night.  I know it's important to take care of myself, which is one area I don't often do great in, but I am really trying!  Oh, and tomorrow I'm getting my hair trimmed and colored.  I'm starting to feel back to my normal spunky self, and know that will help too.

What are some easy, but important, ways you take care of yourself?



Wednesday, July 1, 2015

Madi Proving Those Doctors Wrong.....

"She'll never walk..."


I can't wait for Madi to walk up to those doctors who doubted her one day and show them they were wrong, though even if they weren't it wouldn't have mattered one bit.  She would still be every bit as amazing.  It just goes to show you that you can measure a child's level of function, but you can never measure their determination and inner strength.  

I can't believe how far she has come!  I am so proud of her!

(Please excuse my lack of make up, the mess, the bird that wouldn't get off my head, and the fact that this video was literally taken by an 8 year old :)).....


Thursday, June 18, 2015

A Quick Update on Court in India

I heard back from Pryanka today regarding our first court date in India and our adoption approval.  Unfortunately there is still no judge in the court we are in to be able and review our case, so nothing was done on the 16th.  Please join us in praying that they get a judge in there quickly and that we will not need more than 1 or 2 court dates (I think 3 is the average in that court, but Ramya's adoption was done in 2).  I can't wait to have our little gal home, and pray it is SOON!

Friday, June 12, 2015

A Quick, but Big, Adoption Prayer Request

We have been so busy lately, I feel like we have gone MIA.  We are here, though!  Madi's shunt is healing nicely, both girls had a great appointment with Dr. Goggins, our orthopedic surgeon, Madi just got fitted for daytime AFOs (which she wanted the color of pickles... even though she doesn't like pickles :)), and life is good, just very busy! 

I have a quick adoption prayer request I want to share.  Our first India court date is set at June 16th, but as of right now, they do not have a judge in that particular court to oversee our case.  Please pray they get a judge in there quickly so that our first court date does not have to be postponed.  We estimate we will need a total of 3 dates, and are hoping to travel in 4 months.  I'm praying that there are no delays.

Thank you!!

 

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!