Feeding Therapy, Vision Therapy,Physical Therapy, Neurology, and Neurosurgery, OH MY

I think this is my LAST post to catch up!!  YEAH!!

I have a lot to update on medically, so I will separate each post by topic :)

• Feeding Therapy
• I'm excited to report that Ramya was approved for feeding therapy.  Eating has been just so very hard with her and it's been a struggle to find help.  We've had swallow studies, other feeding therapy evals, attachment therapy, allergy testing, a GI doctor, had her treated for parasites even though that came back negative, treated her H-Pylori, and the list goes on and on. I heard about a great program here in Tucson that focuses on feeding therapy through play.  I was upfront with them and told them she's not the typical kiddo that they see, because there's not a physical or muscular problem we can find that's keeping her from wanting to eat, but explained she never got to be a kid and never got to have fun with her food.  I told them the struggles at home, her history, and they agreed to an evaluation.  I talked more with them during the eval and they agreed to see her as long as insurance would approve it, because it's classified as speech therapy, and she already receives speech therapy weekly.  I was able to get that part worked out so she was able to start.  I'm so so thankful to have help now!  Ramya exerts control through her food.  She spent a really long time not gaining any weight, because when she chooses how much food to eat, she only eats about 400 calories a day and has no desire at all to eat, even when it's her favorite foods.  I was able to get her healthy by heavily supplementing with a high fat, calorie, and protein shake I make for her (this was to avoid a g-tube because she was loosing weight.  I feel like she just needs more time to work through things and a g-tube won't help her emotionally), but she still has very little food intake.  The goal of feeding therapy is to make food fun and help re-set the way she views food.  We are hoping to get her to an appropriate amount of food in an appropriate amount of time so that she gains on her own unique growth curve.  I also want to find another attachment therapist in Tucson so we can work on the emotional aspect of eating while we work in feeding therapy.  I'm praying it helps!

• Vision Therapy
• Ramya is still in vision therapy and we just signed her up for another 12 weeks of individual lessons.  She's working hard though and making improvements, which is wonderful.  Conner, on the other hand, has exited and we are very excited!  His reading and writing have made huge gains and he's very proud of himself.  We are proud of him too, and our pocketbook is quite happy as well.

• Physical Therapy
• Ramya and Madi officially started PT at the Children's Rehabilitative Services in Tucson.  We were really, really wanting in-home therapy but we were unable to find anyone after months of calling.  At CRS our schedule is all over the place, they don't have openings for us every week, and Deena hasn't been accepted yet, but it is a start.  I've been talking to CRS and, even though normally they wouldn't take Deena because she's not in CRS like the other two girls, they are going to make an exception for our family, so hopefully Deena will be able to get in soon.  So far it's going well and we are excited to be back in physical therapy.   

• Neurology
• Last week we followed up with neurology about Madi's medication changes.  We are almost fully weaned on to the lamictal and so far she is tolerating it well.  The plan is to go the longest we ever have without a seizure, and then we can consider weaning down on the keppra.  Unfortunately, we need to do a blood draw and check the lamictal level, but not quite yet.  The hard part is that Madi is a very hard draw and blood draws are also very traumatic for her, so we are already starting to pray it goes smoothly and they are able to get what they need on the first prick. 

• Neurosurgery
• Thursday the kids and I drove to Phoenix to see neurosurgery.  Ramya and Madi both look great and don't need to go back for about a year and a half.  Before we go back in we will get new MRI scans since it's been a few years since their last ones.  If they can hold still, they won't need sedation, but if needed, we are able to sedate them. We will see how they are doing at that time and decide at that point.  We stayed in Phoenix to visit family and friends for the weekend and enjoyed our time there.

I think that's all my updates for now.  Whew, I'm finally caught up!!  Thank you for always following our journey and praying for our family.  We appreciate you!

Building our new Lego Birds set

Playing Barbies... aren't they just the cutest?!?!?!?

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.

 

 

 

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!!



 

 

 

Busy, busy, busy (did I say busy?!?!?!?!?)

Life has been busy, but good!  This is Madi's last week of preschool for the year.  She will have one more year after this, then she will homeschool with Conner and Ramya.  We have about 3 weeks left of homeschooling, then will do only partial summer days.  My goal is to do a lot of fun experiments and the such this summer. 

Last week we picked up Ramya's first pair of KAFOs and she is very, very proud of them!  Ron, our go-to-guy that we love at Hanger, made them for her with love!

 

 

When we picked up her new leg braces, we dropped of Madi's HKFOs, which were not fitting well again (that girl won't stop growing!!!).  After Madi's neurology appointment (more to come on that in a second) today, we picked up her HKFOs, so now both the girls have properly-fitting leg braces.  Double the trouble around here!  Ramya's strength and energy is low still, so we are slowly working on building up.  Today she spent about 30 minutes in the learning tower with them on "helping" me make dinner, which is the longest she's gone yet!!  She did start twisting her legs and buckling from her muscles getting tired, but she really made it a long time!  We've still only gotten about 5 minutes in the walker, but I know every day she will get stronger and stronger!

 

 

Last week (or maybe the week before... time just blurs together right now!), all the kiddos got their teeth cleaned.  I had Conner and Madi go first so Ramya could watch, then it was Ramya's turn.  We held hands and she did great!  None of the kids have cavities... YEAH!

 

 

(conner took this one :))

 

 

 

Today was neurology for Madi.  She is going to try a new seizure medication, since the Trileptal doesn't seem to be keeping her seizures away.  We are hoping this one will do the trick for her.  I just hate, hate, hate that she has them!  And, of course, I feel bad for letting her get the MMR vaccine, since they didn't start until she got it.  I was just really wanting us all to get to go to India together, but that is not how things were meant to be.  I know that may not be the reason she started getting them, but it's just quite a coincidence that she had never once in her life had a seizure until she got the vaccine, and then 4 days later, she started and hasn't stopped.  The CDC website lists ongoing seizures as a "rare" side effect of the vaccine.  Considering she's already neurologically challenged, I think the vaccine was enough to tip her over the edge and begin the seizures.  Anyhow, hopefully this new medication will do the trick and we can get her seizures under control.  She was stuttering quite a bit more after our last big cluster of seizures and hospital stay, but that seems to have gone down again, thank God!  She is still coughing a lot more randomly and has thrown up randomly quite a bit more.  They are hoping the medication change will fix this, but if not, she may need a swallow study to make sure she's not aspirating on her food.  The pediatrician also wanted to get an MRI, due to the continuation of seizures, but the neurologist does not think it's necessary, so we shall see what we do there.

 

Next Tuesday Madi goes in for a VCUG, a renal ulrasound, and then gets to pick up her new wheelchair.  Then, the following week, Ramya needs an exploratory surgery to see what is going on with her urinary system, figure out what and how they did surgery in India, and try and clean up her granulation tissue on her belly button that itches her all the time.  He'll also try to figure out if her muscles are tight enough, or if bulking her up will help keep her urine from leaking out.  Her bladder holds a decent amount, but she leaks very easily, so he thinks it may be a muscle tightness issue.

 

Attachment is going well.  Ramya seems to be getting more confident.  Her fine motor skills and coordination is getting better, and her English is coming along very well!  She wants to be held a decent amount, but also loves to be independent and play.  She loves getting and giving hugs and kisses, and we probably hear "I love you" about 20 times a day, which is wonderful!  We are a very affectionate family, so she hears it often as well :).  We are working on telling the truth and getting attention appropriately/ in appropraite amounts/ at appropriate times, etc..  We are playing games (thanks Amy for the suggestion!) to work on taking turns and waiting our turn.  We are also really trying to teach both Ramya and Madi about strangers.  They both think it's ok to touch and talk to anyone they see.  Madi will ask random strangers for hugs, and Ramya will try and get attention and will touch anyone close to her.  I think I'm going to have to be tougher and firmer with the girls to help them get it.  I really think either would just go with a random stranger if they were asked, which is not ok at all! 

 





I think that's it for now!  Please keep the girls in your prayers as they go through testing, and as Ramya has surgery.  We'll have a busy few weeks, but I am thankful that the girls are followed so closely and get such great medical care!!  I am also thankful that, amongst it all, God gives us many moments of peace and laughter. 

An Update from Our Current Hospital Stay

As some of you know (from my Facebook posts), Madi and I are back at Phoenix Children's Hospital.  We are going on our second night here, though it looks like we will be sprung tomorrow... woooo hoooo!

 A view I'm thankful for, but could use a break from seeing ;)

 

 

 

On Wednesday we had a normal day.  Madi had a little dance recital and was glowing.  She did so great!  Conner had Karate and was given a red stripe on his white belt, and couldn't be more excited! We didn't know he was getting one and we are so proud of him!  Ramya had a good day and was enjoying watching Conner and Madi and being with family.  It was a wonderful day.... until dinner time came.  About half way through her dinner, Madi stopped eating and started looking a little ashen.  She started throwing up and told me her stomach hurt.  Madi throws up during eating fairly often, so it was nothing new to us.  She and Ramya were fighting over a little plastic bird earlier that evening, and Madi was crying and upset that Ramya wouldn't give her the little bird, so I figured the crying upset her little tummy and that was why she was throwing up.  She stopped throwing up, but looked like she didn't feel well.  She was talking to me normally, responding normally, but just didn't look quite right.  She also didn't want her brownie, so that tells you something was very wrong ;).  She started throwing up again, and just kept going.  At first she didn't want out of her special tomato chair (she was sitting and eating next to me), but she kept throwing up, so I took her out, sat on the floor with her (so that if she threw up, we were still on the tile), and held her.  I started noticing she was spacing out and looking off to the right.  I told David something didn't look right and told him to get her rescue med.  He went to get it, and by the time he got back, the repetitive twitching had started.  I gave her one dose, and she started to come back a bit, but still wasn't looking quite right.  We called 911 to have them come evaluate her.  They came and asked a bunch of questions, started assessing her, and then the seizing started again.  They watched her for a bit and were trying to get an IV in (thank God they were able to get it in her little foot.  I'm so thankful she doesn't feel it there so it can't hurt her!!).  I asked if I should give another dose of the rescue meds and they said yes, so I gave another.  She seemed to come out of it a bit, but she had never seized twice in a row before, had never seized other than coming in or out of sleep before,  and she had never not responded to the first dose of rescue meds before, so we loaded up in the ambulance to bring her in and have her evaluated.  On the way to the hospital, she started seizing again.  They gave her verset in her IV, and shortly after, she was completely knocked out, but wasn't seizing anymore.  Because we had just checked her shunt on Friday, they didn't feel the need to do xrays and a CT scan again, but neurology wanted us to stay for another EEG and observation, so they admitted us.

 

 

 



The only thing they can see that may have caused Wednesday nights events is that Madi's urine sample from Friday had grown e-coli.  This isn't surprising at all, since Madi is cathed 4 times a day and always has some bacteria in her system and e-coli is the most common and least concerning.  She also has renal reflux, which compounds everything.  She is on a prophylactic antibiotic because of it as well, to try and keep UTIs away.  Usually, the urologist only worries if she is showing signs of a UTI.  Her urine is clear, though, she's not throwing up unless she's seizing, she's had no fevers, I haven't seen her dumping white blood cells, there is no smell to her urine, her appetite is good, and she has no symptoms of a UTI.  With the culture that grew, though, the numbers were higher than they like to see, even with it being unsymptomatic.  They decided to treat the bacteria/UTI because if it is causing her seizure threshold to lower, then it's absolutely worth treating.  I'm praying that is what was causing her body to go haywire and that, once treated, the seizures will stop.   I told the neurologist that Madi had never seized during the day like that before, and never not responded to her medication like that before, and basically he said seizures can change and it's not unusual for things like this to happen.

Madi just got her second dose of IV antibiotics.  They want to observe her through tonight, but think we will be able to go home tomorrow.  They are upping her doses of daily and rescue seizure meds in hopes that the higher dose will help keep the seizures away as well.  She was on a very conservative dose, and still has some more room to increase if we need.

Conner and Ramya both cried when Madi and I left via ambulance again.  I feel sad that I have to be away from them.  Between the India trip, the extra doctor's appointments, and the trip in last Friday, it's just been a lot for them and their little hearts.  When I was talking to Ramya on the phone last night, she told me she was sad and wanted me to rock her.  I made sure to tell her that daddy is really good at rocking too :).  Today she and Conner came down to visit.  The hospital is still on RSV restrictions, so they couldn't come up, but David and I switched spots so I could spend some time with them.  It seemed to help (well, that and a pack of Scooby Do fruit snacks too ;)). 

I'm exhausted from about 3 hours of sleep last night, and I'm feeling a little sad and nervous about what happened on Wednesday night.  I'm trying to dwell on the positive, though, so I thought I'd post some things I am thankful for.

1) I am thankful for family who comes to help out.  For my mom who helped with Conner and Madi today, and then came down to the hospital to visit with us.  Also, for my sister-in-law who came to visit and brought Madi a cute little green tu-tu and green and pink monster stuffed animal.

 

Rockin' her green tu-tu!

 

 

2) For therapy dogs...

 

 

 

3) For the view from our room...

 

 

 

4) For Child Life and their help keeping Madi entertained and happy

 

Playing Candy Land

 

 

 

5) For reasonably priced food at the hospital that tastes pretty good too.  Also, of course, for the Starbucks here in the hospital!!  I didn't eat anything or get coffee until about 2pm, when my mom came with my wallet, so that Starbucks was like mana from  Heaven right about then :).

 

6)  For amazing doctors that care about Madi and make sure to come check in with us, even when they don't "have to".

 









7) That the paramedics now know exactly where our house is and don't get lost any more ;).

8) For good friends who love us, pray for us, and even brighten our day with little gifts.

 

 

9) For facetime and Yahoo Instant Messenger, helping us feel more connected, even during our times away.

 



10) For my faith and hope in God, because no matter how hard things feel, I know everything will be ok.  I may feel like things are out of control, but I rest assured knowing that God is always in control.

 

 



Tomorrow Ramya has a urology appointment at 1:00 at PCH for a urodynamics test and an appointment with the urologist.  The hospital said they will most likely be able to get us out in time for her appointment, so the plan is for my mom to bring Ramya down and for Madi and I to go right over with her.  It will be another busy day, but then we will be home again as a family, and most of Ramya's initial tests and appointments will be behind us for the time being.  That is sweet music to this tired momma's ears!

An Update from the World of Neurology and She's Weaned

We went to see Dr. Condie (AKA "The Doctor with Spikey Hair" as Madi calls him), a neurologist from Barrow's Neurological Center that specializes in pediatrics and works out of Phoenix Children's Hospital, for our follow up from Madi's seizures.  Dr. Condie is amazing and answered all of my questions.  He would like to do a 3-day EEG on Madi to see if we can catch some of her odd night-time behaviors (like teeth chattering and the such) on the machine/video.  I let him know I needed it done ASAP before India, and he agreed, so we are hoping to get in by the end of October.  Other than the 3 episodes I posted about, she's had 3 nighttime teeth chattering ones episodes that didn't require rescue meds but that were just odd, and 2 throwing-up during sleep episodes that also didn't require medication.  He's not sure if they are seizures or not, so we are hoping it happens while she is being monitored.  I hope to know the date soon, and we will gladly welcome visitors (especially ones that come with food, since it will be hard for me to leave to eat)!

In other news, Madi is officially weaned (from nursing).  She wasn't quite ready to be done, but momma was.  She has been down to once a day for a long time, so it was an easy thing to cut off.  And, no, I never nursed her standing on a stool, in public past about the age of almost 2, or any of the other things the media says you do when you nurse past the age of 1 that make people look at you like you have 3 heads.  She's been getting constipated more easily now, so I've been slipping in extra probiotics, but mostly she's fared well. 

No adoption news yet, still waiting for those court documents to come in, but we hope to have them soon!  I'm starting the application process for my visa, and trying to keep things moving along.  I will update when I know more!