Now for the Medical Stuff

Overall, though we've had plenty of therapy and appointments, the kids are all doing well and are pretty stable medically, which is a HUGE blessing.  Here's a quick update for each kiddo:

• Conner:  Conner had been back in speech therapy for about 6 months to work on his r's.   He was motivated to get them down and just exited in December.  Because that was the final sound he needed, he should be completely done with speech therapy now.  We are all proud of him!  He's been in therapy on and off since he was about 4, so this was a big moment to celebrate.  He wanted to pick dinner, so of course that's what he got!

• Ramya:  Ramya has also been pretty stable medically.  She's needed some wheelchair adjustments and needed her AFO's lengthened (she's had her wheelchair about 4 years, and her AFOs about two, so I'm thankful she's finally grown a bit), and also has been continuing with vision therapy and attachment therapy, and we are also adding back in some cranial sacral work.  She has OT, PT, and speech too, of course, but those will be ongoing therapies.  We just did a routine renal ultrasound and she will need a full brain and spine MRI soon as well, just to see how things are going.  We are praying everything looks good there.  Ramya continues to make progress in homeschool and therapy, and we are proud of her!

• Deena:  My little feisty Deena is doing great.  We had a bit of a scare when her phosphorus came back low at her last infustion/blood draw.  The doctors started talking about rickets, which would be no fun and would just further complicate her bone development.  I upped her vitamin D, which was also low, then we re-tested her.  Her test came back within normal ranges.  She had another draw more recently, which showed that her counts have continued to improve.  We were so thankful for that!  She also has not had another break since her September one. during therapy  This is HUGE and another big thing to celebrate.  She had her first bone density scan, and though it showed a significant defect, the doctor said her scan looked better than she expected.  Yet another big praise!  Her bones are responding well to her Pamidronate infusions and she has gained so much strength.  She spends much of her day standing and practicing walking and is highly motivated, which shows.  She's progressing quickly in physical therapy as well, which is awesome.  She's doing really well!

• Madi:  Madi recently got an ALF (Advanced Light Force) appliance in at the dentist, and we are hopeful we will start seeing changes in her bite, jaw growth, tongue thrust, sleep, eating, and breathing soon.  She wasn't a big fan the first few days, but she doesn't even notice it's in her mouth any more.  She goes back monthly for adjustments and they are pretty quick.  Madi is continuing with vision therapy and has also added in some cranial sacral work, in addition to her weekly OT and PT.  She also just had a renal ultrasound and will have an MRI as well.  That's a long, complicated story that has consumed hours to figure out, which I'll touch on later, but it should all be completed soon.  Madi needed some hormonal testing done with endocrinology, which was not fun at all, but it's over with now, and we have the answers we need.  She's has had a huge growth spurt, again, and no longer fit in her wheelchair or RGOs.  Her RGOs are now in, though they are currently back in the shop for some adjustments, and she's so excited to be back up and standing.  Her new wheelchair should be here next month, which is also exciting news.  She works really hard and it's so fun watching her grow.

Me:  I know, I know, you never hear about my medical "stuff", but today you get to.  I am so very thankful to be healthy and be able to do what my kiddos need, and not have many updates in this area.  Last month I was diagnosed with SIBO (Small Intestinal Bacterial Overgrowth).  I have a minor case, thankfully, but it was the answer to some uncomfortable tummy issues I was having.  I was constantly bloated, puffy, and retaining water, no matter how healthy I ate and how many foods I cut out.  I'd wake up first thing in the morning feeling bloated and full.  You'd think I'd be skinny because eating hurt, but I love to eat, so that never stopped me.  I've been on my treatment plan for a little over a month now, and I've felt so much better.  I am not eating many foods, because of the phase I'm on, and am struggling to keep my daily calories high enough, but I'm trying really hard to keep my calories and energy up so I can do what I need to with the kiddos.  My doctor allowed coffee, as long as I drink the Bulletproof brand, and I am sooooo thankful for that.  I've been able to continue working out, though I feel my muscles get tired quicker than I like.  It's all worth it to heal, though, and feel better.  Some of my symptoms returned recently, though I haven't had any new foods or moved phases, so today I had just bone broth and no food to see if that would remedy it.  Sadly, I feel worse today than I did before.  I'm suppose to do just bone broth one more day, and then if that doesn't work, I'll go back on antibiotics for a few another round.  Though the process can be long and I miss a lot of my favorite foods (sweet potatoes, popcorn, quinoa, salads, and so much more), I'm at peace with the plan.  The most important thing I can do is take care of me so that I can be the mom I need to be, and that's exactly what I plan to do.  I'm thankful to have found a good naturopathic doctor who is willing to dig for answers and keep me running strong.

Other than that, life has been typically crazy and fun.  The girls are currently in dance and have a recital coming up in April.  They've had so much fun practicing.

David took the girls to the daddy-daughter dance at a local Church, and they had such a wonderful time with him.  Three years ago, Ramya and Madi were headed to the daddy-daughter dance at our homeschool co-op when Madi had a seizure and couldn't attend.  Ramya was able to go, which was really special for her, but Madi still talked about how sad she was to miss it and how much she wished she could have gone.  When I read about the dance, I signed the girls up right away.  I'm so thankful the girls have a daddy who loves them so much, and who cherishes spending time with them.  

We had good friends visit this weekend and stay with us, which was so much fun.  We went to ice cream twice (man did that ice cream look good), had pizza (even that looked good, and I gave up on pizza a long time ago because it always makes me feel sick), went to the zoo, and just enjoyed their company and conversation.  

 Last night I was able to meet up with a few of my favorite mom friends, who have been there since Conner and Madi were little, and who helped welcome Ramya and Deena home.  I've missed my friends.  We've always been blessed with such an amazing support group, and moving away was hard. Between having friends visit, and getting out with my friends, my heart is happy and filled.  

I think that's it for now!  I'll update once the girl's testing is done and we know more.  Have a blessed and joyful week!

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.

 

 

 

A big day tomorrow

Tomorrow Madi has a urodynamics test and renal ultrasound scheduled (or maybe a VCUG, not a renal ultrasound; for some reason I just cannot remember!).  These are never fun tests because they require Madi to lay still for quite some time and they can be a bit uncomfortable, even with her reduced sensation.  Madi usually starts to cry before the procedure ever even begins.  Just looking at the tables she has to lay on brings tears.  I always bring snacks, toys, and books to try to distract her, but when your life is filled with appointments and those appointments are often not fun, you know what the real reason behind those distractions are.  You learn it pretty early on, sadly.  One of the hardest things about being a mom is knowing that those tests must endured, but wanting so badly not to have to see your child go through them.  On the other hand, I am so thankful that we have these tests.  It actually wasn't until more recently that I realized how serious urinary problems can be for kiddos and adults with spina bifida.  Madi, thankfully, is followed very closely and her urinary issues are under close scrutiny.  Urinary problems can be very, very serious, though.  Here is a bit of information on the topic:

After meningitis and hydrocephalus, renal failure is an important cause of chronic ill health or death. Early and accurate assessment of urinary tract function will, I hope, prevent later and intractable renal disease, which causes a high rate of morbidity and mortality. This problem must be considered almost as urgent as the associated neurological and orthopaedic problems of spina bifida. http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.1962.tb03173.x/abstract

and

Prognosis varies by the level of cord involvement and the number and severity of associated anomalies. Prognosis is worse for children with higher cord levels (eg, thoracic) or who have kyphosis, hydrocephalus, early hydronephrosis, and associated congenital anomalies. With proper care, however, most children do well. Loss of renal function and ventricular shunt complications are the usual causes of death in older children. http://www.merckmanuals.com/professional/sec19/ch292/ch292c.html

In light of that information, it almost feels silly to get frustrated and complain.  We have so much to be thankful for.  Madi is lucky enough to be born in a time where she can get the help she needs.  As much as I hate these appointments and as much as I hate having to cath Madi and what that means for her, it also means something amazing; Madi is here on earth with us and can live a long, healthy, and happy life.  These tests help her thrive and give her the chance at life that she deserves.  So, while I am not looking forward to tomorrow, I am looking forward, and I am so thankful these tests give me the chance to do so.

It's been a rough week

This week has been a rough week with Madi. To start with, a few weeks ago my grandmother passed away and though we were expecting it, it's always hard to loose someone you love. Shortly after, an 'internet friend's' (someone I met on the internet) baby passed away. She was 9 days old and had spina bifida. She died during a routine surgery to insert a shunt. I met her mother when she contacted me through Madi's blog. She had a sister with spina bifida that died in her 30's after having a bladder-related surgery. The surgery went well but she got an infection that shut down her organs. Now, she was having a baby that would be born with spina bifida. She found my blog and contacted me to ask me some questions about what she should expect. She is a wonderful person and I enjoyed chatting with her as she waited for her angel to be born. This his pretty close to home and is pretty much my worst fear come true. Please keep her family in your prayers.

So at this point in time, I'm a bit emotional because of all of this, which is pretty unlike me (No, I'm not pregnant. If I am, we have a urologist to talk to....), which has not made this week any easier. The fact that this is a terribly busy week, with four doctor's appointments, three therapy sessions, practice for the women's tea at Church, a play, and the women's tea itself, hasn't helped much either.

On Monday we went to Saint Joseph's hospital for some routine tests for Madi. She needed a renal ultrasound and VCUG to see how her bladder and kidneys were functioning. I have been waiting for this VCUG for a long time. Madi has renal reflux where the urine travels back from her bladder in to her urethra on the left had side. It was never severe, only a level 2, and we were hopeful she would outgrow it. In fact, I have been praying very hard that she would. Along with the reflux comes an increased chance of urinary tract infections, and, because of that, they want kids on antibiotics as long as it is happening, and at least for the first year of life. Though I do believe antibiotics are necessary in some cases, I really did not want Madi on them for an entire year. After talking to a naturopathic doctor, we started her on D-Mannose with the hope that it would help. It did wonders...... until I forgot it on vacation and forgot to give it to her when we got back :(. Back to my story.... we went in for the VCUG and I was fully convinced that it would have resolved itself and would no longer be an issue. Unfortunately this was not the case. Not only does Madi still have the reflux, it's actually worse. Not good. To top it all off, her urine was cloudy when they cathed her and sure enough, she has a nasty UTI. It was in the beginning stages so she wasn't showing signs yet. Because of her decreased level of sensitivity she does not fully know something is wrong, which is a blessing and curse all in one. I am thankful it is not painful for her, but it's really hard when she cannot tell me something is wrong with her because she does not know herself. The urologist, Dr. Zuniga, is sending us for another test in a few weeks after her UTI clears up. This test should tell us if her bladder is spasming or not, as well as how much urine it can hold. Depending on the outcome of this test, we may have to start cathing her multiple times a day. To someone with a child who has spina bifida, I know this is no big surprise and no big deal, it is something you do on a daily basis. For me, though, it's heartbreaking. Since before Madi was born my biggest prayer has always been for her bladder to work well enough to not need to be cathed. It's not the cathing in itself but more what it means; more surgeries and more medications (I hoping to get in to a naturopathic urologist so we can bypass most or all of these). First they will want to put her on an antibiotic so she does not get an infection. Then comes the medication to try and increase the amount of urine her bladder will hold. After that we have the medication to keep her dry in between cathing. When she gets older, though, if she does not out grow the reflux, there is a surgery for that. If she does, but we are still cathing, there are surgery options so she can self-cath easier. The more surgeries she has, the more risk she is at for complications, which can always mean one day I do not get to bring my baby home with me. I know I may be jumping ahead of myself, since we do not yet know for sure if she will need to be cathed, but at this point it is a very, very good possibility.

I know that God is in control and I know that He has a plan. I know that I am so fortunate to have my angel here on earth with me. I know whatever is coming our way, we can handle, because He will not give us more than we can. I am trying so hard to remember that right now and not be discouraged. Please keep us all in your prayers, we would not be where we are without them!!


For anyone else who feels discouraged, this is one verse that I call to memory when times are rough:

Joshua 1:9
Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."