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!!



 

 

 

Our Wasted Trip to the ER for Madi

I am happy to report that today we wasted a trip to the ER!  I'm not being sarcastic either, I'm actually quite happy that it was a wasted trip and that she appears to be just fine!

Madi has been very off the last few days.  She is fussy, gets upset easy, is very tired all the time, is restless and not sleeping good, is eating but doesn't have her same appetite, keeps complaining of her left eye hurting (she has a VP shunt on the left-hand side), and is just not herself.  She hasn't had a fever, though, and no throwing up (except for once last night), so I started worrying about the possibility of shunt failure.  After talking to the neurosurgeon's office, we decided it would be best to go in to the ER and run a shunt series to make sure her shunt is functioning ok.  I had called while she was napping (she has been asking for a nap, which is so not like her!), so let her sleep a little bit longer and then headed down to Phoenix Children's Hospital.

At PCH we were admitted quickly and answered all the normal questions they ask.  Next they sent us for a big bang MRI.  They let me get in the machine with her, which makes me so very claustrophobic, but she did a great job laying still, and the test only took about 5 or 10 minutes.  She wasn't a huge fan of all of the random noises but really did wonderful.  Next we went over to x-ray to check and make sure her shunt placement looked good.  I asked them not to test her blood, since I'm not worried about anything other than shunt failure at this point, but did ask them to culture her urine, which came back clear. 

Our neurosurgeon, Dr. Shafron, came in shortly after we got back to the room and said her MRI and x-ray looked good.  Her shunt is still placed well, it's not caught on anything, there's lots of tubing left, and her ventricles look stable.  He said that what we don't know from the images is if her shunt is functioning well or not.  That's kind of the question right now.  While he was in the room, I got to discuss Madi's degree of scoliosis with him, which was nice.  Unless we have to see him sooner, we will follow up with him in six months after getting another set of x-rays, and then try, again, to figure out if we should de-tether her spine or not. 

The ER doctor said that there are a few viruses going around that they are seeing in the ER.  Madi's symptoms do not match what they are seeing, but they said that a virus could just be manifesting differently for her.  The other option is that she is in the early stages of shunt failure, where her shunt has not failed yet, but is also not functioning well. 

They gave me the option of staying the night for observation or going home.  I opted for going home, but have Madi in my bed so I can keep a really good eye on her.  She still sleeps in my room anyhow, because of her seizures, but usually sleeps in her toddler bed.  She was starving by the time we left, as he had been NPO (nothing by mouth) for so long.  I had brought her a granola bar, but it just was not enough.  After we left the hospital I took her to Whole Foods so she could get the gluten and dairy free pizza there that she loves.  I ate my veggie sandwich, she ate her pizza, and we were both happy girls!  She didn't finish her pizza, which again is odd for her, but she was a happy girl!

I'm praying this is all just a virus and passes quickly.  I'm thankful that we are home and that her shunt most likely is just fine.  Hopefully she will improve quickly and be back to her normal self soon! 

So happy with her pizza!! 

 



 

She requested to fall asleep laying on me... such a sweet snuggle bug!

 

A Quick GI and Orthopedic Surgeon Update

Ramya saw Dr. Silber, her GI doctor, a few weeks back.  Though she is still not even close to being on the growth charts, she has gained a little weight and is following her own little curve.  YEAH!!!  I am not worried about her being on the charts, I was just worried about her lack of weight gain at all, and am so thankful to see she is gaining on her own little curve.  She is officially up to 32 pounds (at 6 1/2 years old)!  This is great news!  Dr. Silber is pleased with her growth and

On Thursday, Ramya saw Dr. Segal, our orthopedic surgeon.  He is very pleased with how the muscles in her core and legs are developing.  He thinks if we continue to work with her and help her get stronger, she should be walking with AFOs (instead of her KAFOs) within a years time or so. 

We are still working on getting her to use her legs for walking.  She wants to do it all with her arms, and not use her leg muscles at all.  We are also working on balance and core strength.  It is slow progress but she is really coming a lot way!  She has a very deeply ingrained fear of being dropped, which makes the walking thing a bit harder, but we take it a day at a time.  Her trust is growing and her muscles get stronger and stronger every day.  Right now I focus more on standing and sitting exercises with her, instead of walking, but I know once those care muscles are built up, the walking will come right along.  I am very proud of how far she has come! 

Here are some updated photos of my beautiful girl.  I can't believe she's almost been home a year now.  It's such a blessing to get to be her momma!

 

Ramya's MRI Went Well

A big "thank you" to everyone who prayed for Ramya today.  Though an MRI is not a big procedure, undergoing sedation is never fun on a little one, and looking at those big machines can be scary. 

We got to Phoenix Children's Hospital (PCH) right about on time, at 6:00 a.m..  We were taken back about 5 minutes early and Ramya was prepped.  The MRI started at about 7:10 and lasted a little over an hour and a half.  I had prayed for a wonderful anesthesiologist, as I found that makes a big difference, and God gave us one for sure.  He was very understanding and made sure that I was there to make her comfortable while she was falling asleep.  Ramya was not too happy when the anesthesiologist tried to hold the mask to her face, so I held it instead while I held her hand.  I also sang to her to help calm her, which worked like a charm.  She was out before my first round of "Twinkle Twinkle" (her requested song) was over. 

When I had told the anesthesiologist I wanted to be there when she was waking up, he told me he thinks it's so much easier and less confusing on kiddos to have their parents there when they wake up.  I totally agree and wish all anesthesiologists agreed, because I've had to argue with them more than once!  After the procedure,they brought me to see her.  I got there when she was just starting to wake up but was still very out of it and hadn't opened her eyes yet.  After she started coming out of it, she cried quite a bit, and I just held her.  Once she fully came out of it I gave her apple juice and then she felt much better! They were able to start her IV in her foot after she was asleep from the gas, and I was so thankful for that (she needed contrast for the MRI).  It didn't bother her one bit when they took it out, which I was very happy about.

After the MRI we headed upstairs to visit a friend and her sweet baby who are at PCH right now.  Jemma is a week old and will have her first of many major heart surgeries some time early this week.  Please keep this beautiful little blessing in your prayers.  Please also pray for strength, endurance, and wisdom for her momma, who is there staying with her. 

After visiting, we headed home.  Ramya was very excited to be reuniting with Conner, David, and Madi.  She said she missed them at least 10 times while we were gone.  Tonight she was helping me set the table and I told her we needed 5 forks because we have 5 people in our family.  Then I asked her who was in our family, and she shouted, I AM!  Yes you are, sweet girl; always and forever!  I am so thankful that Ramya is home with us now and that I'm finally able to be there to hold her when she is upset and soothe her during her procedures.  It's a blessing to be her momma!

Oh Me, Oh My We Saw GI

Yesterday was our appointment at PCH's Scottsdale office to see GI.  We saw Dr. Silber because we had heard great things about him from a friend.  Our main goal was to talk about Ramya's bowels because we are still trying to see if she will need a cecostomy in the future, or if she can adequately manage them on her own.  The general surgeon, Dr. Bae, believes that she will likely need the cecostomy, and I agree. I can clean her out just fine, but she has many accidents.  Though she doesn't care right now about them, I know eventually she will.  The cecostomy would help keep her from having so many.  Before we decide on that, though, we want to exhaust our non-surgical possibilities. 

Dr. Silber asked us a lot of questions to find out as much as he cold about her history, what we've seen during her 6 months (AH... 6 months!!!) home with us, where she is at developmentally, etc...  He spent quite a bit of time with us.  I went in prepared to argue why I don't want to give Ramya miralax.  I know that miralax is the go-to for bowel issues, however, I find probiotics, George's Aloe Vera Juice, and Senna when needed, works very well.  I don't like that long-term use of miralax in children has not been adequately studied, and I do not like putting PEG in my kiddos bodies, even though it is not supposed to cross the blood/brain barrier.  Anyhow, I was told by Dr. Bae that she would likely need to try miralax, and most of what I read is that kiddos with SB take a daily dose of miralax, so I was anticipating a struggle.  Thankfully Dr. Silber was totally on board with our approach and saw no need to try and change it.  The only thing he would like to do differently, though, is to give Ramya Ducolax suppositories (well, half of a suppository) once a day to see if we can clean her out a bit more in one setting, and therefore keep her from having so many accidents. 

We talked about her weight gain, as Dr. Bae had put it in the notes he sent over, and he asked me if I wanted to put Ramya on an appetite stimulant.  I told him that Ramya had grown about 3 inches taller in the past 6 months and has also gained 2 pounds recently.  I am thinking she's just one of those kiddos that grows up, and then out, and then up, and then out.  First came the height, and now a bit of weight gain.  I told him I'd rather wait and just see how she does, and he agreed that we could do that. 

Dr. Silber noticed that Ramya's iron levels are pretty low so he'd like Ramya to take iron supplements for a few months.  He thinks because she was so deficient for so long, her body is still struggling to catch up, but that after a few months, it should be fine and stay fine.  He doesn't see it being an ongoing problem and doesn't think that she will need supplementation past a few months.

It's hard to add another doctor to our list of frequents, as Ramya now sees the pediatrician, orthopedic surgeon, neurosurgeon, endocrynology, and GI frequently, and Madi now sees the orthopedic surgeon, pediatrician, urologist, neurosurgeon, and neurologist, but I can't complain because my girls get AMAZING care and have doctors that truly care about them.  I am so very thankful for that! I can't wait until the day when they can see the doctors at the same time, and at the same place.  That will be a life-saver.  Right now Madi is on our insurance and also long-term care and can only see her doctors out of CRS.  Ramya is on our insurance, but we can't apply for long-term care for her, as we are still waiting on everything to be 'official' in Arizona so that she can be give our last name.  Until then, she sees the exact same doctors (for the ones that they both see), but at PCH.  So, for now, we can't coordinate.  The good news, though, is I can sneak in questions to the doctors about the kiddos they aren't seeing, and save myself a call in to the office. 

In other news, Madi got her new HKFOs today.  She was sooooo very excited.  I'll post about that soon, and show some pictures :).

 

3 out of 4 down and a nice embarrasing moment...

Today we had #3 out of our 4 appointments this week.  Today was Ramya's turn and we went to see Dr. Segal, our orthopedic surgeon, out of PCH.  Our appointment was at 10:45 and we made it up there just about on the dot.  I had made an x-ray appointment for Ramya at 12:00, hoping to be done by then.  Ramya needed an x-ray of her bowels and also one of her left hand to check for age.  They just want to make sure her age and bone growth/development are in sync.  At 12:00, we still hadn't seen the doctor, so I found a nurse and had them call down to x-ray to let them know we would be late.  We saw the doctor at about 12:15 and he had 3 students with him.  He said he was teaching the students about spina bifida, and I told him, "Great!  You get two kiddos for the price of one today!".  The kiddos were getting quite restless after a long wait, so Dr. Segal did some magic tricks for them.  They really enjoyed them and it helped put them in a better mood.  He's always great with them and I really appreciate it!  He's a wonderful doctor and even came by just to say "hi" to Madi when we were in the hospital for her vesicostomy, even though he didn't have to.  I love and appreciate that he sees my children for the amazing little blessings they are, and not just for their diagnosis.  He showed me Ramya's hip x-ray and told me both her hips are displaced.  They aren't totally out of socket, however, her sockets are not carved out correctly, so they sort of pop in and out.  When he was showing us the x-ray photos, there was a heart on one of them, because they use a little heart-shaped blocker that says, "save the gonads" so the radiation goes around a kiddos reproductive area.  Anyhow, Madi was very fascinated with the heart and thought it was really Ramya's heart.  I explained to her that a real heart doesn't look like that and would be in a different spot.  I told her it was just a sticker, but then she thought that they put he sticker IN Ramya.  After explaining that it had just gone on the outside, and that they had already taken it off, Madi decided to yell that Ramya had a penis.  We then got to have the talk, again, about Ramya being a girl and not having a penis...  in front of the doctor and the students.  They were really trying not to giggle.  Fun fun!  Dr. Segal said we need to keep watching her hips, but that we aren't going to talk about surgery for them at this time.  Next we headed down stairs for x-rays.

After checking in with radiology we took a brief a potty break then got Ramya's x-rays done, which didn't take too long.  We were done by about 1:15.  We headed over to the cafeteria next, as the girls decided they didn't like the snacks I had brought and everyone was starving.  My kids LOVE to go to the cafeteria and order food.  And by love, I mean LOVE.  They look forward to those little trips and it really brightens our otherwise not so fun days.  They offer gluten-free pizza and pasta, as well as other things they really enjoy.  Unfortunately we didn't have a great cafeteria experience, but in the end, the kids had full happy bellies, and that is what counts.  In a nutshell, the guy running the pizza/pasta area reallllly didn't want to make our pizza, as he was busy (which is understandable), but at 1:45, he still hadn't even started our pizza and my kids had, quite literally, been standing in the same spot waiting for about 25 minutes.  He just kept putting us off.  I asked to talk to a manager and he was wonderful.  He got our pizzas started for us and even gave us two free meal tickets.  He really was a nice guy.  I tried to explain to him that we come to the hospital very, very often and that it's not a lot of fun for my kiddos, but that their gluten-free pizza is a like a little ray of sunshine for them (I'm not exaggerating either, it really is.  They get so excited for it.  Conner even chose to come with me to the hospital so he could chose food from the cafeteria instead of going to hang out with Grammy, whom he loves, because it's just that exciting for him).    I told him I expect to wait a little longer, because it's a speciality item that they offer, but that if they are going to offer it, they really should be prepared to make it.  I thanked him for offering it and told him how much we love having that option available and how much it means to the kiddos.  Finally at about 2:10 our food was ready and we got to sit down to eat.  The kids were very very happy and scarfed down their food!  Conner looked at me and said, "Momma, thank you for telling that man to please make our pizza.  I was really hungry and I wanted it so bad.  I was so glad you said that".  Hearing that made it all worth while!

We finally made it home at 3:30, and it felt great to sit down and relax for a bit!  We had left at 10 a.m., and it was a long day for just one appointment and some x-rays.  I really didn't anticipate us being gone so long! 

When we were at Dr. Segal's office, we met a cute little boy with osteogenisis imperfecta 3 (OI3).  This, of course, made me think of Deena, which, of course, reminded me how much I dislike this long process, which reminded me of how much longer we have to go to get her home, which then reminded me that I haven't updated about our process!  Right now I don't have much to tell.  We are working on homestudies and are getting things done as fast as possible.  We basically have to re-do everything, which is a lot.  That's about all of the update I have for now, unfortunately.

I thought I'd share a few little adoption attachment updates.  The other day Madi was talking to Ramya.  She said, "Ramya, I really miss-ed you when you were in India.  I really wanted you to come home.  But now (long pause) I want you to go back to India."   Ramya very seriously and with emotion said that she didn't want to go back to India, which was nice to hear.  It was a good opportunity to talk with the girls about how Ramya part of our family, forever, and she is never going back.  Ramya is forever my daughter, they are forever sisters, etc...  I think it's a good thing for Ramya to hear and be reminded of how much we love her and how, no matter what, she is ours, forever.  I know that all of her last placements have been temporary, but I really want her to see that this isn't just another transition; this is it.  Tonight the girls were taking a bath and Ramya put all of the alligator bath toys in a bucket.  She said, "look, this is a family!"  It made me smile and it was a good ending to our day!

That's about all the updates I have for now.  Tomorrow we head back to PCH to see our urologist and check on Madi's vesicostomy.  After that we head to Flagstaff to  my parent's cabin for a few days.  We are all so excited and can't wait!!

Whew... what a week... oh wait, it's Tuesday!

This week has started off with a bang!

Monday I took Ramya to the endocrinologist.  They agreed that the labs our pediatrician look to check hormone levels look good, but they said those tests aren't always accurate, as hormones fluctuate.  They are sending us for a longer test out of Thunderbird hospital where they will put hormones in her body and see what her body does with them (or something to that extent!!).  I guess it takes about 2-3 hours.  She will need an IV (boo) but it's a quick, awake, outpatient procedure, so that's good.  They also want an x-ray of her hand to try and check her bone age, as she is very small weight and height-wise for her age.  We were headed for an x-ray Thursday anyway, so we're just adding that one one.  The took a blood sample as well to test for a few more things that might be causing her lack of weight gain.  Fun fun!  Ramya did great with the blood draw.  She wanted to snuggle right in to me, which was totally ok with me, and then announced that it didnt' hurt too bad!

On Monday I also got our second post-placement report in from our homestudy agency, so that I could add photos and send it off to WACAP.  I read through the report and got a little sad when I read that Ramya's emotional age is 2.  Though I know that it is true (I figured she was somewhere between 2 and 3), and we expected her to be right where she is and are totally ok with it, it was still hard to read on paper.  I have no doubt that she will grow and change quickly, and I love her just the way she is, but it saddens me that International adoptions take so very long to complete and, therefore, contribute to our sweet kiddos getting so far behind.  She is doing amazing, though, and I am so thankful that God blessed us with her! 

We also got a special box in the mail on Monday from my wonderful aunt who spoils us.  My aunt and uncle live in Hawaii and always find special treats for us.  There were cute little things for the kids, and some very yummy things for David and I.  It was just the pick-me-up we all needed!!  The best part, of course, was the Hawaiian coffee straight from Hawaii!  It doesn't get any better than that! 

Today we headed down to Children's Rehabilitative Services (CRS) for Madi's appointment with Dr. Segal, her orthopedic surgeon.  Our appointment was at 9:45, but we didn't get to see him until about 11:30.  Of course I brought ipad, but forgot to check the battery, and it was dead.  Conner's leap pad worked for about 10 minutes, and then those batteries died too.  The kids did great, but it was just a long wait. We found a "Where's Waldo" book and I couldn't help but laugh every time Madi yelled, "Look!  I found Weirdo!  There is Weirdo!".  Madi was all smiles for Dr. Segal... until he needed her HKFOs off to check out her hips and legs.  That's when all heck broke loose!  She cried hysterically because she didn't want to take them off.  The long wait, the fact that it was almost lunch time, and the fact that she was having so much fun showing off, really didn't help either.  Poor Dr. Segal.  He tried so hard to make her happy, but she cried the entire rest of the appointment (about 25ish minutes by the time we made our next appointment and such too).  Ramya also decided she should get in a funk because Conner didn't like it when she tried to grab my phone from him without asking.  So, at that point, I had two melting down.  I apologized and thankfully everyone was very understanding.  Hopefully when Ramya sees him on Thursday out of Phoenix Children's Hospital (PCH) we will have a much smoother appointment!  Dr. Segal agreed that Madi's HKFOs are too small (again!!) and wrote a prescription for a new pair.  We will go see Ron in August to get Madi casted for a new pair, which she is VERY excited about!

Conner got a special treat today because David's parents took him to Jumpstreet after lunch.  He had a blast and loved getting out and getting lots of attention for a bit.  The girls also got to watch two episodes of Daniel Tiger while he was gone, and that made them very happy, so it was a win-win.  We limit TV viewing and I have the kids agree on what show(s) to watch for the day, so it's not often Conner agrees to Daniel Tiger, hence why they were so excited....

Tomorrow we will meet with a potential respite and HAB worker for Madi.  I pray she works out well!  Thursday we head down to Phoenix Children's Hospital so Ramya can see Dr. Segal and can also get 2 x-rays.  One will check her bowels and one to check her hand bones.  On Friday, we head down to Phoenix Children's Hospital again so that Madi can have a follow-up appointment with Dr. Zuniga, our urologist.  After that we will drive to Flagstaff to spend a few nights at my parent's cabin.  We can't wait!!  It will be the perfect end to a crazy week! 

In other news, I got a refund check from Phoenix Children's hospital today for overpayment.  Somehow they managed to over charge us by over $900!  I'm not exactly sure how that happened, but I am thankful they caught it and I am so not going to complain about getting the money back!

 

A medical update for Ramya and Madi

Earlier this week, I took Ramya in to see a general surgeon about the MACE surgery she had done in India.  Dr. Zuniga, our urologist, wanted to see if Dr. Bae (the general surgeon) could get it working, or if he even thought we needed to.  Dr. Bae reviewed her files and the MACE site and said he believes that the MACE isn't really usable. Normally the MACE would go in at the very beginning of the colon so that you could flush the entire length of colon.  Ramya's was put in at the very end of the colon, though, which doesn't really help her much.  If we decide to try and do surgery on her bowels to help her empty them, she will need a cecostomy tube.  He reviewed some of her past x-rays and said that, while she is not distended or impacted, she does have a lot of stool throughout her entire colon.  If that is her "normal", then he thinks she will likely need the cecostomy.  My goal this month is to clean her out and try to keep her cleaned out so that we can see if we think it is necessary for her to have a cecostomy tube inserted or not.  If she does, we would wait until we do her bladder surgery and do it all at once.  I'm trying not to be bummed about all of these wasted surgeries from India, but it is so hard.  Her MACE isn't usable, her mitrofanoff isn't usable, and they did a bladder neck tightening that isn't helping at all.  I hate that I couldn't be there advocating for her, but I am so thankful that I am now!!

Madi went in to Dr. Zuniga, our urologist, today.  He said her vesicostomy is working well, but it is swollen more than he thinks it should be, so we have an appointment in two weeks to go back and have it checked out again.  Other than the swelling, he is pleased with how it is all working.  Yeah! 

I have been thinking about Madi's kidneys lately and am just so thankful that her right kidney is big and strong and is taking over for her left kidney.  God is so so good and I am SO thankful for His protection of my beautiful girl! 

A Kidney Update

I forgot to update on the blog yesterday, but WE ARE HOME!!!  We spent last night in our own bed, and it felt wonderful!  Wooo hoooo!  I slept from 8pm until 6 am straight, which is a lot of sleep for me.  Here's a little update, then on to the kidney news :).

Monday night was not a fun night.  They couldn't get her tube to drain, though it was draining around it well, like Dr. Zuniga said it likely would.  Starting at about 1 a.m., they kept coming in about every 30 minutes trying to get the tube (that was draining the vesicostomy site) to work.  They kept trying to flush it, thinking it was clogged.  It was hard to sleep with them coming in and out, but we got some sleep here and there.  Dr. Zuniga came in at 6:30 a.m., checked her vesicostomy, and saw that the tube was out, which is why it wasn't draining.  He said he was going to take it out anyway and so he wasn't concerned at all. 

We had two different tests that needed to be done, and they were scheduled for 3:00 and 3:30.  The first test was to check her kidney function and the second was a swallow study.  We hung out, did crafts, visited with friends, then we went off to the studies.  The swallow study went well and we saw that Madi is not aspirating on her food, which is great!  It also doesn't seem to be getting stuck in any little pockets in her throat or anything, so that is great news.  She coughs quite a bit when she eats, and it's reassuring to know that it's not anything too problematic.  We went back to our room and were discharged about an hour later, getting us home at about 5:30.  Our friends Ryan and Leslie brought us a very yummy dinner and it was great to rest and eat a yummy meal as a family!

This morning I got a call from Dr. Zuniga, our urologist (I say "our" since every one of my kids has seen him; even Conner!).  He wanted to check on Madi, we chatted a bit about Ramya and her urinary stuff, and then he checked Madi's kidney scan so he could give me the results from that.  Her left kidney should be functioning at about 30%.  The results of the scan said 1.5%, but he said you really can't even measure that low, so it's likely some where between 1.5 and 6%.  So, basically her left kidney isn't really working at all.  My heart sank a tiny bit when I heard that, but then came the good news.  Her right kidney doesn't look like a typical kidney of a child with spina bifida (which is often times smaller, shaped differently, etc....).  Her right kidney is actually larger than normal for a child her age, but it's a good thing!  It functions super well, and makes up for the lack of her left kidney function.  He said her blood labs showed completely normal kidney function and that you would never know her left kidney doesn't function, because her right functions so well to compensate.  I asked what that meant in the long-run, and he said as long as her right kidney stays healthy, which it should, that she shouldn't ever need a transplant or dialysis or anything because it functions so well.  He compared it to what he sees with kiddos born with only one kidney.  He did say, though, that if the kidney doesn't grow/start functioning better with her having a vesicostomy, we may want to think about removing it.  He said since it's not really doing anything anyway, but still runs the risk of getting an infection, if we are in there for another surgery anyway, we may want to remove it and then not have to worry about it getting an infection or have to worry about the reflux that was on that side.  I'll have to research that a bit more but we don't have to worry about that right now anyhow. 

Madi is healing pretty well.  She had some pain this morning but felt better when I gave her some medicine.  She also has some pain when I change her diaper, but other than that, as long as she is sitting or laying and resting, she doesn't hurt too much any more.  I'm so glad!  She really is such a trooper and such a sweet little girl!

Thank you so much for all of your prayers for my little gal.  We really appreciate you!

Vesicostomy Surgery Success

Today was Madi's vesicostmy surgery.  Check-in was at 8:30 and we were actually on time, which is big for us!  We got checked in, got taken back to pre-op, talked with our urologist, Dr. Zuniga, and talked with the anesthesiologist, then went back for surgery at 10:30.  I told the anesthesiologist I'd like to go back with her until she feel asleep and he happily obliged.  Some make you put on your tough momma look first, but he said it was my choice and that he was fine with it.  I was so relieved!  I had to wear shoe covers, a full suit, and a hat, so I was pretty styling ;). 

 

 

I was so glad I was able to go back with her.  Once we got back to the room she took a look around and said, "Momma, I'm scared!"  I reassured her that everything would be ok, held her hands, and sang to her.  She was out in just a few minutes.  I always hate the part when they start flailing their arms while they are falling asleep and you have to hold them.  I was glad to be the one to be there to do it, though.  I told her I loved her, gave her a kiss, and walked to the waiting area.  Man that walk is rough!  I hate having to leave. 

 

They came and got me about an hour later to let me know that the surgery went well.  There were no complications or anything during surgery, and Dr. Zuniga was able to quickly accomplish what he needed to.  They were also able to get the IV in her foot, which is always wonderful, since she doesn't feel it there, so it can't hurt/bother her.  He told me there was a temporary tube draining the vesicostomy site that would come out the next day, then warned me that it would be leaking around the tube and not so pretty.  He was right ;). 

 

When I went back to see Madi she was not a happy camper.  At first she was sleeping, but then she woke up and started crying a lot.  She was angry because I wouldn't take her home and kept hitting me and yelling at me.  They gave her something to calm her down, along with pain medication, and then she fell asleep for a bit in my arms.  After she woke up, I got her to drink some water, eat some snacks, and we got her a movie.  That helped a ton!  We waited in post-op for a bed for quite a while, over 3 hours.  We could have technically left sooner, but there was just no open bed for us yet. 

 

We finally get settled in a room at almost 4:00 and it was nice to be in a bigger place with a nicer bed.  Madi was really hungry, so we ordered her favorite meal here; gluten-free noodles with marinara sauce and a tiny bit of cheese.  I put on a movie for her and she went to town on her noodles, then all was right in the world again.  We limit tv time at home, so she's in Heaven having it be unlimited here!

 

 

 

Ramya, David, and Conner came to visit, and Madi enjoyed that a lot.  We also had visits from some of our friends; Our friend Leslie and her daughter Riley, Our friend Charles, and our friend Kim, her mom Lynn, and her two little Mayzie and Dutch (Mayzie is a inpatient a few floors down from us and we were happy they let them escape to visit!!).  Madi enjoyed the little gifts they brought her and she also really enjoyed the company.

 

Madi is recovering pretty well.  I think she feels some pressure/spasming in the bladder, as she tells me she has to go potty and starts getting upset.  This is usually about the time when the pain medication is starting to wear off.  They have her on morphine and/or Tylenol with codeine when it hurts.  We try the Tylenol first (per my request), but then give the "big guns" if that's not enough to help her. 



 

Tomorrow at 1pm they will start the kidney test.  They will put the dye in her IV (you know, that fun radioactive material ;)), and then 2 hours later, they will see how her kidneys are doing with it.  We also need a modified barium swallow study (for something totally unrelated, but that's a whole different post, and more radioactive material.. woot! ;)) and we are hoping to get that done while we are sitting and waiting for the other test.  After testing, we get to go home... wooooo hoooo!  Oh, she will also get the tube out tomorrow so that the vesicostomy is just open.  It looks a little gnarly right now (I've been changing her gauze, so I see what it looks like under the gauze, and it aint a pretty sight!), but it should start looking a lot better soon.  There is still some blood coming out of the tube, but more urine now.  Madi is sleeping next to me in bed, and I think I'm about to join her.  She seems quite peaceful right now!

 





We are thankful for the peace we have in knowing that God is in control.  He takes great care of our girl!  A big "thank you" for all of your love and support for Madi and our family during this time.  Your calls, texts, messages, and prayers mean more than you will ever know!  We are so thankful for our village and we love each and every one of you!  I'll update more once we know the results of tomorrows testing. 

The Answer to Our Mystery... is a Mystery!!!

Today I thought we were going to have a day off (boy doesn't that sound nice!?!?!?).  We had therapy planned from 10-12, in our home, and then Conner had Karate at 5:30, but the rest of our day was nice and open.  We thought we would go visit a friend who is in the hospital that we have really been missing and wanting to see. Our plans changed, though, when I got a call from Phoenix Children's Hospital (PCH) this morning asking us to come in at 3:15 for Ramya's dye study.  We headed down, got there, and they couldn't find her time slot.  I worried a bit thinking that I brought the wrong girl for the wrong dye study, as I got a call about both girl's dye studies today.  Thankfully, though, they were able to find her appointment and they got us in quickly.

The whole point of the dye study was to find out what that mystery cavity was through her mitrofanoff.  When I try to cath through it at home, I only have success about once a week.  Of course, when I cathed her through the mitrofanoff for the study, it went straight in the bladder.  go figure!  We filled it up with dye, then they had me take the cath out and try again, so we could see if we could get some dye in the mystery cavity.  Well, that's when things went South.  The catheter went down past the bladder.  They thought it came out through the urethra, but it didn't.  Somehow it entered her vaginal cavity through some mystery passage way.  Well, that, or urine was refluxing  in to the vaginal cavity.  We turned Ramya every which way, but we really couldn't quite figure it out.

After that, I slowly removed the catheter through her mitrofanoff as they put in the dye.  We didn't find any mystery cavity, however, we did find a big gap that explains the oddness we have been having.  There is a section of the tubing material (I think they used a piece of intestines) that is much wider than the rest.  One section of it goes off to the side.  So, when the cath goes in, it's easy for it to go off to the side and not down to the narrow part it needs to.  Here's kind of what it looked like, for a visual...

(and yes, I really did draw that on paint... be jealous of my mad drawing skills ;)).  So it was wider at the top, went off to the side, then got narrow at the bottom.  Where it goes off to the side is where they think the cath keeps coiling and why it's hard to get it to work correctly.

 

I'm glad to have that mystery figured out, though I'm really not sure how it can be fixed and I'm curious to see what the doctor says when we see him.  I'm also a little stumped on our new mystery, and am anxiously awaiting what the doctor says about that as well. 

 

Ramya did very well for the test and everyone thought she was just the sweetest little one (she is).  They said they are surprised I've only had her home for 4 months because she seems so comfortable and I seem to know so much about her already.  I really do think she's doing well so far.  She still loves sharing a bed with us and being rocked and held, but she  is starting to get very independent too, and I hear "I do myself!" quite a bit.  Her English is really coming along and she is learning quickly. 

 

So that's that for now.  I'll update again when I hear from the urologist.  I'm praying we can find a way to fix it or manage it, other than surgery, so please join me in prayer for that as well.

 

Home from Surgery

We are home from Ramya's exploratory surgery at Phoenix Children's Hospital today.  Dr. Zuniga, Ramya's urologist, wanted to go in and try to figure out why her mitrofanoff surgery that she had in India isn't working correctly and also agreed to take off her granulation tissue for her, as it itches her like crazy.  They told me that I needed to stay in the room and they would bring her back, and I very nicely told them that wouldn't work for us.  They agreed to let me go back with her until she was asleep (although they made me wear a funny suit... see below) and that was nice.  Unfortunately they woke her up before they got me, and she was NOT happy about that.  I walked up to her bed and she didn't look happy.  I said, "Hi Ramya, are you feeling ok?" and leaned down to kiss her.  She broke down sobbing and saying, "mommy" over and over.  I just held her and rocked her until she settled down.  The nurse said she was crying and they thought she was in pain, so they gave her medicine.  I told them she was probably upset and looking for me because I had told her I'd be there when she woke up.  I'm sure she was confused as to why I wasn't.  They had also put an IV in her hand and she told me that it hurt.  We came home with pain meds in case she needs them, but so far she hasn't. 

 

 

There is some good news and some not amazing news from Ramya's surgery.  The good news is that Ramya's bladder and muscle tone seems pretty good, considering.  Her bladder isn't too rigid, is a decent size, and can hold an ok amount of urine.  Her muscles aren't too weak and should be strong enough to keep her urine in.  She leaks quite a bit, though, even on ditropan, so we aren't exactly sure why she's not holding in urine without leaking so much.  The second mystery is that Dr. Zuniga found a cavity in the stoma area that is keeping it from draining normally.  Basically, instead of the tube going straight down to the bladder, there is some kind of cavity part of the way down.  Sometimes, "when the stars align" the catheter goes straight down through the cavity in to the bladder, and we can get urine out.  Mostly, though, it just gets stuck in the cavity and coils.  There is some old urine in there, as well as lots of mucous.  Dr. Zuniga wants to do a dye study where we put some dye in through the port in the belly button and just see where it goes and what it does.  After that, we can decide how to proceed with fixing it.  It may very well mean another surgery, but we shall see.  He was able to take off the granulation tissue for her and I'm excited for it not to itch her any more.  When she saw it was gone she got VERY excited and had to show Conner, David, and Madi.  She keeps saying, "look momma!!  It's better!" and showing me too.  I'm glad she's at least happy about having that gone. 

 

After we got home she ate some toast and eggs.  We're relaxing and watching a movie, but she seems back to her normal self!  I'm thankful that she is feeling better so quickly.  Kids sure are resilient!! Thank you for all of your prayers! 



 

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!

A Life Update... Urology, UTIs, Attachment, and More!

I have no good title for this post, because it's going to be a hodgepodge of updates :).

First off, I talked to the urologist and because Madi is non-symptomatic for a UTI, he doesn't want to treat her.  I have learned over the years that you don't start antibiotics unless the urologist thinks you need to. Doctors and hospitals look for signs of infection often times without taking cathing, and the bacteria introduced there, in to account. There have been numerous times we were told to treat her UTI and then her urologist reviewed the results and said not to.  I figured as much, which is why I didn't fill the antibiotic prescription the hospital gave us when we are in on Friday after the seizure/headache/projectile vomiting from Madi. And on that topic, I really, honestly, just believe her getting better was a miracle.  Once when Madi was a baby, we'd gone through heck with her shunt.  We had an infection just a few weeks after we were out from the hospital that landed us back in the hospital for almost 3 weeks.  That cleared and the new shunt clogged.  That was another 3 day stay for them to revise it.  About two weeks later, Madi was showing signs of shunt failure again.  I took her in, Dr. Moss checked her shunt, and he said that it was definitely not working again and would need to be revised again.  We spent the night and Madi went NPO for surgery in the morning.  The morning came and revision time came, but when Dr. Moss checked her shunt (as he always does before surgery), it was working again, so we got to go home.  I really think that's what happened this time too.  Madi was so very miserable.  She had the seizure, she didn't want to open her eyes, she kept holding her head saying it hurt, she was projectile vomiting, and she kept drifting in and out.  Right before the CT scan, it was as if a light switch was thrown.  All of a sudden, she was her normal happy self.  It was crazy!  I really believe God cleared that shunt for us!


Today we headed back down to Phoenix Children's Hospital.  We were there twice last week (once for each girl) and will be there twice this week (for Ramya).  We are nearing the end of the testing she will need done (for now) and I can't wait!  PCH is an amazing hospital, and we are very thankful for the care they have given our girls, but I am growing weary of the 30-40 minute drive a few times a week, and the number of hours we spend there.  Today Ramya had a VCUG to check and see if Ramya still has renal reflux.  The good news is that it does not look like she does!  YES!  That means the surgery (well, half-surgery ;)) she had in India was not a complete waste.  It did correct her renal reflux.  That is awesome!  The test also showed that she did not have the augmentation surgery when they did her mitrofanoff surgery, which is a bummer.  If Ramya is going to be "socially continent", it's a surgery she will need.  It's not a fun one, and it is usually done with the mitrofanoff surgery, so it's too bad that it will mean another surgery.  Boo.  I am very thankful that when and if the time comes for that surgery, though, that I will be able to be with her and make sure she is comfortable and well cared for.  That is something worth celebrating for sure.  My little girl will never go through surgery alone again!


On Friday, Ramya and I head back to PCH for a urodynamics test that will give us a better picture of how much fluid Ramya's bladder can hold, if it is rigid or spastic, and how quickly it leaks.  After the test, we will see the urologist to go over our recent testing and get a better picture of what we need to do.  We know she may need the augmentation surgery, we need to deal with her granulation tissue on her belly button that is driving her nuts, and that the MACE procedure she had done in India isn't looking right (placed right) and needs to looked reviewed as well.

Attachment is chugging along.  I still hold Ramya quite a bit, though much less than in the beginning.  She still prefers to sit on my lap and have me feed her, so thatly is something we do most of the time.  She also still prefers to be rocked to sleep and sleep in our bed, so that's what we do!  I have been tired lately (and seriously need to go to bed now) and haven't been as cheerful and full of life with the kiddos lately and I need to get myself caught back up on sleep.  Thank God for coffee!

Ramya's time-ins and times where she just gets in a funky and can't get out of it have been decreasing, which is nice, though they can still be pretty intense.  Yesterday we had a melt-down that lead to a time-in.  She was very upset and yelling at me and told me "me no like you, momma!!".  I wasn't sure if I should laugh or cry.  I told her I'm sorry she feels like that, but I still love her very much.  She wasn't too fond of that answer, but it's the truth :).  I know she was just upset at me for enforcing rules she didn't want to follow, and I know that she does enjoy spending time with me, but it still made my heart a bit sad to hear those words.

Ramya's English is getting better.  She is understanding more and more every day and is expressing herself more and more.  She has just discovered a love for salad and asks for "tiny bites" of mine all the time.  She still loves eating beans and meat, and could eat them all day long!  She's also discovered a love for peanut butter and jelly sandwiches, which is really nice since it's a snack I can easily bring when we are on the go.


 I'll be back later to update with Easter pictures. All the kiddos loved Easter.  Conner told me that in Church he learned that Easter isn't about eggs and candy.  It's about Jesus dying on the cross for us because he loves us so much.  He talked a little about what exactly that meant too.   I was quite proud of him for expressing what he learned (we had talked about it at home as well, but I wasn't sure if anything sunk in), though he still woofed down the candy and was giddy about the egg hunt ;).  Madi loved the hunt but wanted nothing to do with any of the candy.  Ramya loved the hunt, loved the boiled eggs, and thinks the purple jelly beans are pretty nice as well. 


I think I about covered it all for now!  I'll be back with photos and more urology updates soon!
 

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)!!!