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.

 

 

 

My Momma Never Said There Would Be Days Like This....

If you've wondered why I've been so quiet lately, it's because we've been really busy!  It seems that each day is filled multiple appointments and/or multiple therapies lately, not to mention homeschooling, homeschool co-op, neighborhood group, Church, and the rest of "life".   I'm looking forward to it calming down a bit within the next few weeks.  For now, we are just enjoying and cherishing moments of joy and togetherness amid the hustle and bustle.

As for medical updates, we have a lot!!  Adoption updates are slow.  I'm working on some paperwork and we're waiting for some approvals, and that's about it.  We go in for our Biometrics in a few weeks and then hopefully things will move a little faster.  I also hope to get a bunch of paperwork notarized at the bank next week, as well as at the doctor's office.  The paperwork isn't due yet, but I want to keep plugging away at it in hopes of having it done when the time comes so that it doesn't hold anything up.

And now for the medical "stuff"....

• Ramya got fitted for her first wheelchair a few weeks back.  She has been using Madi's old chair, as she still fits in it, but the wheels have started crumbling.  We could buy new wheels, but she's finally growing and won't fit in it much longer anyhow, so the time has come to get her a new one.  She picked purple, of course, and is very excited!!  We should have it in about 2-3 months.
• The 3 kiddos got eye exams a few weeks back.  Ramya's eyes are adjusting well to her new glasses and the strength.  We are starting a taping exercise to help re-train her muscles and hope that works well.  We are really hoping to avoid an eye surgery and are trying anything we can first.  Conner has a hard time converging his vision/eyes, but it's minor, so for now we are watching it and hoping he grows out of it.  Madi's eyes are just fine!  Conner and Madi were really hoping for glasses so they are a big disappointed that they do not need them.
• Ramya has been undergoing a series of psychoeducational tests over a few days and weeks at the Melmed center to determine where she is at educationally and how we can best help her learn.  The test was pretty consistent with the testing done at the school district and what I'm seeing at home, however, it gave me more detail about how to help her learn.  Her lowest areas are working memory and fluid reasoning.  Her strength is quantitative reasoning.  She does best when she has visual cues and has a visual plan, so I am going to make a bunch of "social stories" in picture form for her (aka.... pictures of how we brush our teeth, how we get dressed, how we eat, our daily schedule, etc...).  I am also supposed to start working on environmental print so she can start identifying and learning sight words based on commonly used objects (chair, table, door, plate, etc....).  Other than that, I was told I'm basically doing what I should be doing when it comes to working with her.  I would like to find a tutor for her that can come to the house a day or two a week that is knowledgeable in working with kiddos with learning struggles that can also help me with strategies for helping her learn.  I know that the testing is skewed for her and that she will test lower just because of her language, so I'm not too focused on the numbers she got, but I do want to help her learn in ways that best work with her learning styles and abilities.  
• Madi and Ramya had follow-up appointments with urology and both girls are doing well.  They go back in 6 months for renal ultrasounds and another visit.
• Ramya was evaluated for speech therapy and qualified.  Her articulation is great, but they will help her with language processing and things like that.  She had her first session and enjoyed it!  We were able to find someone that does in-home therapy, so I'm happy about that.
• Madi got her new HKFOs from Ron at Hanger and they fit her really well.  Ramya also got hers widened so they are fitting her much better now.   They are both happy girls!  And of course, we went to urban cookies afterwards for vegan gluten-free donuts, so that made them especially happy!
• Cranial sacral therapy, occupational therapy, attachment therapy, and physical therapy are all  going well and the girls are doing great!  
• I think I finally got to the bottom of our appointment mess and how to coordinate the girl's appointments.  Basically, Madi is AHCCCS for her secondary insurance and she is supposed to go to CRS (children's rehabilitative services) to see her doctors.  Ramya is finally on AHCCCS but was never put in CRS.  Because of this, we were still having to make separate appointments out of different offices even though they see the same doctors.  Ramya should have also been put into CRS, but after many hours of calls, we found out they coded Ramya's disability differently than Madis, even though their primary "labels" are the same, so Ramya never got put on CRS.  We think it's all fixed now and an application has been submitted, so hopefully she will get in as well (she should) so we can start coordinating appointments better.  
• Poor Madi got two spots we think are staph.  One is by her mouth and one is in her pull-up area just under and to the left of her vesicostomy.  We aren't sure how she got them, but considering she rolls on public bathroom floors with her wheelchair, I'm not too surprised.  I always wash her hands, but then she touches the dirty chair  wheels (she is always playing with the wheels though she actually uses the little railing for wheeling). I am going to start disinfecting the wheels when we leave the bathroom to help avoid this type of problem in the future.  Our naturopath prescribed an antibiotic cream for her, and I have her on colloidal silver as well.  It's just about all cleared up.  The tricky part has been keeping the area below her vesicostomy clean and dry, so she's been having lots of  un-clothed time to air out.  I use waterproof pads and prefolds under her on her little chair, then a rolled up prefold over her vesicostomy that I change often.  At night, I use a waterproof pad under her with moisture-wicking material on top and absorbency, then prefolds under her and on her vesicstomy, and I change them about every 2 hours.  I'm not sleeping much, but it's working and keeping her dry.  I also am doing insane amounts of laundry, but it's worth it, because the spot is almost gone.  I'm really hoping to avoid oral antibiotics unless we need them.  
• Ramya's food panel finally came back (LONG STORY) and it's not showing allergic reactions to beef and pork, but it could be because we eliminated those foods after her last testing.  For now we are going to continue to avoid them and then slowly reintroduce and see what happens.  I'm praying her gut is finally healing and she will be able to eat beef and pork again, in addition to the many other foods she cannot have.  
• David and I got tested for the MTHFR gene mutation and each have it to a degree.  That's a big post I will post later and talk more about, but it makes a lot of sense.  We are staring supplementation with methylated folate and methylated b vitamins for ourselves and the kiddos. 

I think that's all of the big updates from the last few weeks.  Don't forget to join us for the rock-and-roll for spina bifida on November 8th... go team Double Trouble!!

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!

 

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!
 

A Crazy Testing and Happy Birthday Kinda Day

Today was a crazy day, but a nice day too.  We woke up, did our morning routine, worked on homeschooling, went for a walk, then it was off to the doctor for Ramya and I.  Madi's respite worker, Amy, came to help out with the other two squirrels for a bit while I was gone and before David got off work at two to take over.  First was an ultrasound, followed by an appointment with the urologist (more to come on that soon).  After that we hustled out a CT scan and x-ray series to check her shunt.  The last two tests are in preparation for her upcoming neurosurgeon appointment, where we will make sure all is well with her shunt.

There was some good news and some bad news at the urology appointment.  The good news is that her kidneys look good.  There were no abnormalities or anything found, and her kidneys seem to be working well.  The doctor said her mitrofanoff is open and working, but the reason I can't get anything out of it is because of her constant leaking.  Madi is cathed through the urethra (what I call the "normal" way, since it's normal to us ;)) four times a day.  She pretty much stays dry between cathings.  Her bladder is very slightly spastic, but mostly is not.  It grows on it's own little curve and holds a decent amount of liquid.  Ramya is a whole new story, though.  She leaks like crazy and I get almost nothing out because she leaks so much.  I feel like I constantly change her and she is constantly wet.  She seems to hold very very little urine.  For example, today I cathed her "the normal way" in the morning.  She was soaking wet and I got very little out.  I skipped her early afternoon cathing as I was trying to keep her full for her ultrasound.  I just changed her and left for the doctor.  I gave her tons of water, as she was supposed to drink a ton for the ultrasound.  When we got there, she was wet again, but the tech said there was almost nothing in her bladder.  We cathed her a little later so the doctor could try her mitrofanoff, and we got almost nothing out.  Apparently this isn't really what they like to see, as we can't really achieve "social continence" like that.  The urologist wants her to be on dithropan (which she was on in the orphanage) to see if we can get her leaking under control.  Madi had terrible reactions to dithropan and is doing fine without it, so we have kept her off and just monitor her closely.  Looks like Ramya seems to be one of those kiddos who needs it, though.  He said we also need to do a urodynamics study and a VCUG to see just how much she can hold, to see if her muscles are just too week to hold things in, and to see if she still has renal reflux (among a few other things). 

He's a little confused at the motrofanoff surgery she went through.  Normally they go in and attach part of the intestines (I think that's what he said ;)) to the bladder to help it not be spastic and also to help it hold more liquid (again, I think that's what he said, I am sure some of you out there can help me explain this a little better ;)).  He doesn't think that part was done, and he has no idea why they wouldn't do that part too.  He said he needs to do the other two studies, in addition to the reasons posted above, to help him figure out exactly what they did do, and why they did what they did.  Basically he's stumped and thinks she really needed that part of the surgery and will need another surgery since that part wasn't done.  Drat.  He's also stumped by her MACE surgery.  He said it isn't in the typical spot and he doesn't know why they put it where they did, or if it will even work right how they did it.  Double drat.  He's going to take a better look at that later, but said not to use it for now.

Ramya did well with all of the testing and I think it also helped our bonding.  I stayed close and held her hand during the tests, assuring her that they would not hurt.  She seemed to trust me and want me close, so that made my momma heart happy.  I, of course, carried her around the hospital for all of her testing and she sat on my lap while we waited.  She seemed to enjoy the one-on-one time, though it wasn't for a fun reason.  They also realized it was her birthday and let her pick a little gift.  She picked a Littlest Pet Shop set with a girl doll in vintage clothing and a spider pet with a vintage hat.  She was very excited about it all!  They also gave her a little snack (goldfish crackers and fruit snacks) which she was happy about.  Overall we were gone quite a bit, from about 11:45 am until about 5:30 pm. 

Poor Conner isn't doing well with having me gone so much.  He now has my cell phone number memorized and calls me a lot while I'm away.  I don't mind and happily take his calls when I can, because I know it helps him feel better.  Today was a call about a big scratch he found on his foot that he doesn't know how he got.  He thought I needed to know and would want to look at it when I got home.  I assured him I would examine it and kiss it when I returned home, and I did.  He called about 3 other times, but I was only able to answer 1 other time.  He played with Amy and Madi a bit, but mostly said he wanted alone time and sat in the garage.  When I got home he told me he prayed for God to bring me home faster :(.  Poor little guy.  He did have fun going to the movies with David, so that is good, but I think I'm going to have to figure out a little mommy/son date this weekend.  He is seeming to really need some time with me.

Now to the FUN part of our day!  After dinner (thank GOD for leftovers that came from amazing friends who have been gifting us with yummy food!!) we gave Ramya her presents from us and did cake.  I am the lamest mom ever and she got a piece of pre-made, individually sold, cake from the store.  She loved it, though, and, literally, devoured every single bite!  I am throwing a family party on Sunday that will be the princess and the frog theme, so she will get a nice birthday party soon.  I am thankful that she was happy with her little party this evening, though, since I felt like I didn't do a very good job celebrating.  She enjoyed being sung Happy Birthday so much that she started singing it to herself too!  She loved all her gifts, but especially loved her baby doll and the outfit for it.  I had purchased it for her at a little toy shop by our house that was going out of business and was clearancing everything out.  I've been saving it for her and I'm so glad she loved it!  Both she and the baby are happily sleeping in our bed as we speak :).  I'm not sure if she's ever had her birthday celebrated before, but I am thrilled that she was able to come home in time for us to celebrate her!

 

Opening gifts is so fun!

 

Sister, what did you get???

My favorite birthday gift!

 



 

We had to change the clothing right away ;)

 

Blowing out her candle (she didn't want to go to the table and wanted to stay sitting with her baby in her lap, so I complied ;))

 

Finger-licking-good!

 

 

Many people have asked how I'm doing, so I thought I'd just tell everyone at once.  If you see me, you will likely think I look tired.  It's for a great reason... I'm tired!  Ha!  I don't think I've slept amazingly for, say, 6 years or so (wait, how old is Conner again ;)).  It's more than that, though, (because actually my kiddos are pretty good sleepers, thankfully!!).  I'm just tired because our days are busier right now.  Even just being home is busier.  There is more holding and lifting and more emotional "stuff" lately.  There are more phone calls to figure out appointments and insurance and all that fun stuff in there too.  There are adoption reports due and meetings with our post-adoption agency.  There is lots of running around and appointments, though I put off anything I can.  Conner and Madi have regressed a little and are needing more momma time.  And, amongst all of that, there is the typical hustle and bustle of life and housework.  There is also time with my hubby, which is just so needed and important, and worth every second!  I am thankful, though, that being a mom, and especially a mom of a child with special needs who needs occasional ambulance rides and hospital stays, has well-prepared me for life's busyness.  I have this supernatural ability to run effectively on minimal sleep, to go abnormal amounts of time with no food, water, shower, bathroom, etc..., and be able to manage a household and retain information (mostly ;)) from the doctors.  I am, of course, exaggerating a bit, as really, I am taking pretty good care of myself.  I make sure to sleep 7-8 hours a night, eat healthy(ish... lately I've been not doing very good in this area) meals, exercise, and get some "me" time in once everyone else has gone to bed.  However, I am still drained.  A second cup of coffee in the afternoon (if Starbucks wasn't so expensive, I'd have a major addiction going on there) has become part of my new routine and keeps me going.  I have started biting my nails again and am back down to sad little stubs.  I am happy to say, though, that I am still going, mostly with a smile on my face, and that is what matters!

 

Another question I get a lot is how people can pray for us.  Here are some ways you can pray...

1. That we can find peace and joy amongst our doctors appointments and the things taking us out of the home
2. For Conner and Madi as they adjust to me being gone a little more (thankfully this should taper off a bit after we get over this first hump of appointments)
3. For our bonding and attachment as a family as we try to balance it all
4. For grace for ourselves, as well for all of our kiddos, as we travel this journey together
5. That we can get Ramya on long-term care

 I'm sure I have lots more, but I'm getting tired and can't think of them all right now!  I want to update everyone on how our attachment is going too, but that will just have to wait for another night :).  

 

How do you make the tough decisions?

My heart has been heavy and my mind has been spinning the last few days.  As I previously blogged about, Jo, from Wacap, contacted me to let me know that Ramya, the four-year-old little girl in India that lit our adoption fire was now back up for adoption.  Great, right?  Well, sort of.  When we heard that she had a family, we then agreed to pursue Manasa, the one-year-old girl in the same orphanage that also has spina bifida.  We started our home studies, we took our classes, we talked to families, and we started to prepare ourselves... to bring home Manasa.  Of course, since our home studies and the such were not complete, and because there is another family now looking at Manasa, we knew she may never be ours, but we started to plan, unintentionally but also intentionally. 

I talked to Jo on Tuesday and asked what we do in this situation.  We now have two little girls who could both really benefit from joining our family.  Jo was not sure what we do because she has never dealt with a situation like ours before.  We cannot take both girls because 1- We do not think it is a wise choice considering their medical needs and the age of our children and 2- even if we did, India will not let us.  I asked if we are going to have to choose and she said possibly eventually, but not yet.  How in the world DO you choose, though?  We have been praying that God will make it very clear what we are supposed to do and who we are meant to adopt.  Here's the kicker, though.  Ramya is older and has more medical needs, so it is more important for her to find a family that is prepared to help her.  The problem?  She has more medical needs, and quite possibly very serious ones. 

I talked to Dr. Zuniga, Madi's urologist, about Ramya when we first considered her.  When I told him she was already having kidney failure, he told me that we can do a vesicostomy and go from there.  Ok, no biggie, we can do that!  Then David talked to his mom (who is a nurse) and she started throwing out things like kidney transplants and dialysis, as well as a short life-span.  Whoa.  Now that is a little scary.  I mean, if it was just David and I, or my children were grown, I would take her in a second, and love her for every second, as long as I could, whether that time frame was 3 years or 30.  But we have young children.  How do you explain to your children that their new sister will die, sooner rather than later?  I mean, we all face death, that is our reality.  We all have had people we love pass on, but how do you go through that with your children, and do you CHOOSE to go through that?  And how do you pay for those kinds of medical bills and keep food on the table?  But, on the other hand, how do you let her die without knowing the love of a family?  How do you look at her little face and say no?  It is SUCH a tough choice to have to make.  We knew that at some point we might have to make a choice like this, but it is so easier said than done.  We may be getting ahead of ourselves a bit, because we do not know if those are things she would face, but they have really made us stop and think and have sent us in to a tizzy. 

Dr. Zuinga has all of Ramya's medical records and is reviewing them for us.  I asked him to not just tell me what we would do now if we brought her home, but also what we would do in two years if she continues to get UTIs and her kidney failure gets worse.  We pray God makes our choice clear, and we ask for your prayers in that direction as well.  We know the right choice is not always the easy choice, but we don't know what that means right now. Though we are not sure what God has in store for us, or for the two little ones in India, we do have peace knowing that He knows and He has a plan.... a perfect plan.

Our fun today at a Hope Kids event that took place at Bumble Bee Ranch



A little update from our appointment

We did not get to meet with the urologist today, but we do have an appointment with him in a few weeks.  Because of that, I do not have too many updates, but I do have a little bit of new(old?) information.  Madi still has renal reflux on the left hand side and it is still a level 5, which is the highest grade of renal reflux.  I was realllllly hoping that it had resolved, but it has not.  As of right now, I am not too sure what it all means.  I know eventually it will mean surgery to correct it, but I am not sure when they will decide it is not going to resolve itself on its own and that the surgery is necessary.  Thankfully we have a very conservative urologist who never rushes in to a surgery, so for that, I am thankful.  When we have more information, I will update everyone.  Please keep Madi and her urinary situation in your prayers and pray that we will clearly know the best way to proceed.  I have to share a picture of Madi from today.  She and Conner were playing with Titan, our dog, and were both laughing hysterically.  I had to snap a picture because it was just too adorable. It's hard to have a bad day when you look at this face!

Yesterday Madi had a urology appointment with Dr. Zuniga at Phoenix Children's Hospital. She had her 6 month urodinamics test, which looks at how much liquid her bladder can hold, as well as how it functions under high pressure. He was happy at how she functioned under high pressure and said that it indicates her bladder is not rigid, but has some flexibility. This is a good thing because she has renal reflux and a rigid bladder will push the urine back up the ureters instead of emptying. Hers, however, empties, which is great! Her bladder still does not hold as much as it should, though it did grow, which is good. He thinks we may see good long-term benefits from using dithropan. We are going to start her out very, very slow and see how she reacts to it. He said that dithropan is most important when they are little, though, because it helps increase the bladder size and will help it to grow normally. I talked to the naturopathic doctor and, unfortunately, there is no natural replacement for it, so we are not left with too many options. The reason to give it, though, is that if we can get the bladder to grow normally, she may be able to avoid a bladder surgery in the future, and of course, any surgery you can avoid is HUGE. Also, once you perform those surgeries, you are cathing for life. She may have to cath for life anyway, but at least we have a chance of changing that right now. 

Madi did a great job during the test.  I stay and talk/sing/play with her during it, which helps.  They turned on Finding Nemo for her, and she was fascinated by the fish.  I also brought a little bit of "baby bribery", aka organic chocolate chips.  She LOVES chocloate and it really helped keep her happy and in one spot.  Overall, it was a good appointment!

(Ceretta's Mint Chocolate Face)

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."