Updates from our most recent appointments.... Neurology, Orthopedic Surgeon, PT, OH MY!

I just realized I never updated from our appointments last week! 

On Thursday the week prior (the 12th), Madi saw Dr. Goggins, our orthopedic surgeon, at Children's Rehabilitative Services (CRS).  We got some better x-rays so we can better see how her scoliosis is doing.  Her degree of scoliosis when standing in her HKFOs was 42 degrees.  When she was laying down, though, it went to 27 degrees.  He felt it was a good sign that her back is still flexible.  He didn't want to tell me if he thought she was a good candidate for a detethering surgery and he told me he wasn't a neurosurgeon.  This is why I hate that we don't have a multidisciplinary approach here in Phoenix.  Instead of the doctors talking to each other, we talk to each one separately, often getting passed back and forth.  It really frustrates me.  Don't get me wrong, I'm thankful we have amazing doctors here to help us out, but I just wish the doctors would talk  to each other as well in order to come to a conclusion about what they felt was best.  Anyhow.... He felt that waiting 6 months and x-raying her again would tell us more about if she is stable or changing.  He did also say her scoliosis and tethering are in the same area, meaning her scoliosis is likely from the tethering, but we don't know if de-tethering would correct the scoliosis.  He also said that he didn't see any big urgency to do anything about her spine right now, so that was good news.  I have an appointment set for 6 months, but also have an e-mail in to the neurosurgeon to see what he says about her degrees of scoliosis. 

On Tuesday I saw the dermatologist.  I have a few spots I like to keep an eye on (I've gotta keep myself healthy for these kiddos!), and everything looked fine.  Yeah!

On Wednesday Madi saw Dr. Condie, our neurologist.  We talked about her last seizure (she hasn't had one since the one a few months back) and racked our brains trying to figure out if there was anything concrete that could be the cause.  There didn't seem to be any reason, other than she did go through a growth spurt, meaning her dosage might have just been a little low for her.  We are keeping her dosage of Kepra the same, but will adjust it again when she gains weight again.  It was a pretty boring appointment, just like we love!

On Thursday we headed back down to CRS so that Madi could get evaluated by the physical therapist there.  We already have an amazing physical therapist, and are not looking to switch, but we are still fighting insurance to get Madi a medium Rifton Dynamic Stander, and CRS thought this may help.  The PT agreed Madi needs a bigger stander, agrees that it's beneficial for her and could tell she uses it often, and is working on submitting a letter for us with the verbiage they are looking for.  We've been appealing and have not been getting anywhere, so hopefully this does the trick!!

In other news, I got a letter this week stating that Ramya was approved for the department of developmental disabilities (DDD), meaning she will now get a secondary insurance through the state.  YEAH!!!!  This will pick up the out-of-pocket money we spend on therapy every week for her.  It also means I can FINALLY coordinate their appointments.  I had the girls seeing the same specialists, but because Ramya didn't have the secondary, she couldn't go to CRS, meaning she saw them out of their office, and Madi saw them out of CRS, and none could be coordinated.  So awesome that we can coordinate now!!! 

I think that's about all the updates we have for now.  Tomorrow we head to see Dr. Goggins, our orthopedic surgeon, out of Cardon Children's Hospital for Ramya's appointment, so I will update on that appointment soon. 

Have a blessed week!

So Frusted Today!!! Canceled MRI....

Well, today did not go like I planned!

At 4:25 today I got a call from Banner Cardon Hospital.  They were not able to get prior authorization from Madi's secondary insurance APIPA/CRS for tomorrow's MRI.  After doing some research I discovered that it's because CRS (the medical clinic Madi goes to for her appointments), who actually are the ones who put in for the MRI, put Madi's diagnosis as hydrocephalus.  APIPA/CRS wouldn't authorize it because her diagnosis was listed as hydrocephalus.  While Madi does, of course, have hydrocephalus, her main diagnoses are spina bifida (which IS what is covered by APIPA/CRS), Chiari II malformation, hydrocephalus, and epilepsy.  They do not see patients at CRS based on the diagnosis of hydrocephalus alone, nor does the insurance plan cover kids based on hydrocephalus alone.  Of course, they waited until most offices were already closed to call me, so now I can't get it figured out today.  I was able to get ahold of Dr. Moss's nurse, who said she would make some phone calls and get back to me, but at this point, it's 6:00 and I still haven't heard back, so I am guessing she couldn't get ahold of anyone and went home.  Though I know there must be a reason we are not going in tomorrow, and I trust in God's plan, I am just feeling frustrated with all of the fighting and miscommunication.  There is always a phone call to make, an office to talk to, something to fight for.  I am also dealing with trying to get Ramya her next Lupron Depot Pediatric shot (another long story) and am trying to fight to get Madi's Rifton Mobile Stander approved by insurance (another long story again), as she really needs a size medium.  I love my kids, and I will continue to fight so they can get what they need, but sometimes, it just makes me tired.  I also do a lot of prep work for appointments and scans, coordinating child care, shopping so I can plan diet-specific meals while I am away, preparing for the worst-case-scenarios just in case, cleaning the house so grandparents can come watch the kids, and all of that fun stuff.  I am so thankful for the energy and drive that God gives me, because that is what keeps me running this race!

I'll update everyone once we get another date set.  Thank you for keeping Madi and our family in your prayers, and please keep it up!

But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

- Isaiah 40:31

 

Whew... Only 2 More to Go!

We are almost done with our few weeks of appointments.  It's been a rough few weeks for sure!!  We've seen the orthopedic surgeon, the neurosurgeon, the urologist, the pediatrician, the dentist, and we've had multple tests.  Next week we get to pick up Madi's HKFOs and get her wheelchair adjusted and then we are DONE!  WOOO HOOO!

Conner had to get a spacer put in a spot he had an absessed tooth that had been pulled.  We went in last Thursday at 12:20 pm.  He did great and is very proud of his new silver spacer. 

The poor guy couldn't eat or drink 3 hours before his appointment, though, and was really hungry.  I decided to take him for his first visit to Sonic and he LOVED it.  He sat in the front seat with me and we ate together and talked.  We were there about 45 minutes because he kept deciding he was still hungry and ordering more food :).  I spoiled him and let him get a nasty cherry slush that was probably full of red dye, lots of sugar, and high fructose corn syrup.. YUCK!  He sure loved it, though.  He has decided that every time he has to go to the denstist, he and mommy need to have a Sonic date.  He's such a cute and sweet little boy!



The wait to get in to see the doctors have been long, and it's taken lots of creativity to keep Madi entertained.  Here we are checking Mr. Potato Head's head circumference.  He seems to check out ok ;).

Of course, we tried on his glassess too.

Although the waits stinks, I am very glad that Madi has a team of doctors who spend time with us and really care about her as an individual.  Seen here is Dr. Moss, her neurosurgeon.  He is really an amazing guy and has fought for Madi since before she was born.  He is happy with how Madi (and her shunt) are doing and doesn't need to see her for another year!  He feels her seizure was most likely caused from the MMR vaccine and does not recommend further testing at this point, unless the seizures continue.  I am also happy that he has a special place in his heart for Ramya and is eager for her to come home.  His daughter has two adopted boys from Korea, and he is one proud grandpa!

Madi wasn't too fond of the urodynamics test to see if she still has renal reflux.  She actually did great during the test, but walking in the room and seeing that big machine just did her in.  Poor baby.  She wasn't fond of the wait for that test either.  Lukcily Child Life came with an iPad in tow and she lit up.  She layed completely still for the entire test while she watched Mickey Mouse Clubhouse.  I've decided iPads are the BEST!  I'd love to get one some day!  It would sure make our appointments go smoother!

Today we saw the urologist and we discussed Madi's urodynamic test results.  Madi still has grade 5 renal reflux on the left hand side, which I already knew (I saw it on the screen during the test).  I'm bummed about it, but it is what it is.  He isn't ready to try and correct it yet and wants to watch it a bit longer before doing anything.  He did say her bladder was holding a good amount of liquid and he was very pleased with that.  Yeah!  The wait for urology was actually pretty short, thankfully.  Child life also came back with the iPad to entertain Madi, which made her VERY happy!

We seriously need one of those things!!

I've tried to have lots of fun with the kiddos when we aren't at our appointments.  We've seen movies, gone out to yogurt, gone on treasure hunts, finger painted with pudding, and lots of fun things like that; it seems to help.

(such a goofy little guy)

In other news, Kyla, the ntee we have staying with us for a bit, officially graduated highschool... YEAH!  We are VERY proud!!











We are still waiting to hear back on our NOC and hope to have it soon.  We have our little gifts for Ramya all packed and ready to go.  Once we get our NOC, we can send them off to her.  I can't wait for her to know we are here waiting for her!  My awesome friend, Kimberly, gave me a code for a free shutterfly book, so I made one for her all about our family with lots of pictures in it.  We also are sending some books on adoption, a book about plane flights, some knee pads, leg warmers (her poor knees were so sad looking :(.  Hopefully these will help!) a stuffed animal, a little blanket, and I think that's it for now... Oh, and a photo album.  We only have a set amount of space to send things in, so we have to limit what we send.  There is one thing I know for sure...

That's all for now!  Stay tuned for photos of Madi's new up-ups (HKFOs) next week, and please keep praying for that NOC to go through.

Our Dynamic Urodynamics Appointment

Ok, I admit, I failed at making the title enticing.  It's a bit hard to think of a clever title when you are talking about updates from the world of urology.  I tried, though.


Today Madi had a urodynamics study, her third thus far, and the results were pretty good! 


It was a looooooooooong study, much longer than normal.  First, the nurse had Madi lay down, but then left the room to talk to the doctor.  We happily waited.  Then, she cathed Madi and told me her urine was a little cloudy. I told her it was because I had to wake Madi up from a nap to get her there, and she had not had anything to drink since the last cathing, since she was napping.  She decided to test the urine, just to be safe (which was a decision I supported, don't get me wrong!), but left Madi all hooked up to the monitors and tubes while she left to test it.  The test showed a very slight infection, so she had the doctor spin it and look at it under a microscope.  The doctor did not see anything that looked like an infection/bad bacteria (bacteria is expected with a child cathed, so they only look for certain bacteria), so they sent it off to be cultured, then she came back to finish the test. 


The test itself took about 10 minutes, but poor Madi had to lay there closer to an hour.  She was SUCH a trooper, though!  They put a movie on for her, but she could care less about it, so I had to be creative in finding ways to convince her to lay still and not mess with the tubing.  Annie's organic gummy rabbits were amazing... for about 3 seconds until they were gone.  After that, the phone worked for a bit (looking at the photos and videos on it), then we read some books, played with her baby monkey stuffed animal, drew (while laying down), played with the stuffed animal more, sang songs, and did the etch-a-sketch.  Fun, fun!!


After the test, we met with the doctor, who said her bladder was not being spastic and appeared to be pretty normal, which is an improvement from last time.  He also said that it has grown and is holding more urine.  Though it is still not a "normal" bladder, which for her age would hold about 120 somethings of urine, it's pretty good, holding about 80 somethings of urine.  He started to tell me the dithropan was doing it's job, then remembered we took her off the dithropan ;). 


The plan is to watch and wait, and see what happens.  He moved her to once a year for her tests, which was nice.  Sadly, she cannot go off of antibiotics yet, though the doctor and I did have a nice lengthy discussion about why I hate them, and he agreed, so that was good.  He explained surgery options that might fix her reflux so that she didn't need it, and why those were just not good options right now.  So, for now, we watch and wait.


In other news, Madi also had wheelchair clinic this week at CRS.  She needed some small adjustments made to her chair.  Here's a picture of her and Conner goofing off together.  They had so much fun!

They tweaked the breaks to tighten them, lowered the foot plate, and we are good to go!  Madi hasn't even had this chair a year, and in the beginning, her feet did not come anywhere close to the foot plate.  This time they lowered the foot plate by 1 1/2 inches, so that her feet just rest nicely.  Good growing, big girl!

A clean bill of health

Yesterday Madi had a ct scan and shunt series (x-ray series) to check her ventricle size and shunt positioning.  I HATE taking her in for these because she cries non-stop and it makes my heart so sad for her.  Usually the singing and games don't help, and I never leave her side, but she still cries.  I want to pick her up and run away, but of course, that is not a good plan.  This time, though, we had a great tech who was slow and gentle with her, making sure to tell her all about his big "picture machine".  We played peek-a-boo in it and he did his job quickly and well.  I think I saw one tear, but a round of "twinkle twinkle" and she was all better!  It was such an answer to prayer.  They gave her 2 stuffed animals (a fish and a bear) for being so brave during both of the procedures.  She was very, very proud of earning them.  She decided to give the fish to Conner, but held on to the bear the rest of the day.

Today we headed back to CRS to see Dr. Moss and go over the images.  They normally like to have you do both on the same day to save you a trip, but it just didn't work out this time around.  Madi wanted to show off walking for Dr. Moss and he got a kick out of seeing her hopping around.  Everything looks great, just the same as our last set in October.  This time we get to go a whole year without another scan, YEAH!

I remember about 2 1/2 years ago when we Madi's shunt was having so many problems.  At day 2, she had her first shunt put in.  It was non-programmable and on her right hand side.  Things were looking good so we got to go home after 5 days in the hospital (it was a little longer since they closed up her back too).  Less than two weeks later, though, we found out she had an infection and we were back.  That stay was almost 3 weeks.  During that time they pulled the shunt out of the right side, put in an external drain, changed that out for a new external drain, and put in a new VP shunt on her left side, this time programmable.  We thought we were in the clear until a few weeks later she started acting weird again.  We took her back and, sure enough, her shunt was clogged.  We got lucky and were only in about 3 or 4 days that time around.  A few weeks later, we were back, because we thought it failed again.  The doctor tested it and said it wasn't working.  We scheduled surgery for the next morning.  The next morning came, though, and it was working again!  Praise God, no more surgeries!!!  We left and have not been back since!  I remember feeling so worried and scared, because we couldn't make it out of the hospital for more than a few weeks at a time.  Conner was not even 2 yet, and it was so hard being separated.  I am so thankful that Madi's shunt is working well now, and that we haven't been back for 2 years.  It has been amazing!!!  As crummy as those visits can be, though, I am so thankful we have them, because had Madi been born before the time that shunts were invented (in the 50's), she wouldn't be here with us today, and I cannot imagine life without her.  She is such an amazing little blessing!!

A few updates from us....

1- Poor Madi has a cough and cannot sleep laying down.  I must admit, though, I've enjoyed the extra cuddles!!  Here she is in our toddlerhawk.

2- Conner started swim lessons and loved his first one.  He loves the water!



3- Today we saw our orthopedic surgeon, Dr. Segal, at CRS.  He is a great doctor and we really like him.  He said everything looks good with Madi.  Her back is straight, her feet and legs look good, and her hips feel ok (though he thinks one might be dislocated), so she's still all set for walking.  I need to get her in for some adjustments to her HKFOs, but that's about it.  He wanted to take a video of her walking/jumping to show at the Spina Bifida conference that is in June in California, but she wasn't wanting to cooperate.  He is speaking there and was hoping to get some video.  Next year, I guess ;). 

4- I figured out something today with Madi's HKFOs and now I feel like a complete dooface.  I thought she couldn't sit in her carseat with her HKFOs on, which is a problem since she never wants to take them off, because she leans back too far in them and I didn't feel she was safe.  Well....... I realized today I need to unhook the elastic in the back, and then she CAN sit straight up in them, without undoing any of the straps or anything.  DUH!  I am SUCH a dork!  I have spent months trying to figure out why I couldn't get her in there, and it was SO simple! 

5- Apparently our adoption paperwork went from Oasis to Wacap, then back to Oasis, then back to Wacap, so it's still in lingo and has not made it to a judge yet.  Nancy, our social worker, is hoping to have it there this week.  Please pray we get a judge that finds us favorable to adopt, and that completes his or her paperwork quickly, so that we can get officially matched with one of the girls.  And, since we will be officially matched with one of the girls, PLEASE pray that God makes it VERY clear who we are to adopt.

An update from the Urology world

We saw Madi's urologist, Dr. Zuniga, on Wednesday at CRS.  He said everything looked good but the ultrasound was showing that one of her kidneys had shrunk.  She has a level 5 renal reflux on her left side, and that was the side showing a smaller kidney.  He said at this point he is not worried.  It is very rare to see a child that has not had any UTIs (she had one but that was over a year ago before the cathing) with kidney shrinkage.  He said most likely the difference is due to ultrasound tech error where one of the techs just measured wrong.  Either this tech measured it smaller than it is, or the last tech measured it larger than it really was.  He did say, though, that when we check it in 6 months, if it is still measuring smaller, we might want to try mixing dithropan with saline and injecting it straight into her bladder after cathing to see if we can help it grow normally.  I don't really like that idea, but we shall see.  He also said that the amount of liquid her bladder is holding isn't what it should be, but for her it is good and he is happy with the results.  The good news is he wants to wait before we do surgery.  He said that the standard protocol for renal reflux in kiddos with spina bifida used to be to correct the reflux, just as you wold with a kiddo without spina bifida.  He said the problem with that, though, is that you usually end up having another procedure down the line anyway (one to increase the size of the kidneys) and that surgery usually corrects the reflux anyway.  I love that he is a "wait and see" doctor, but that means we have to keep her on prophylactic antibiotics :(.  I HATE giving her antibiotics like that. I mean I seriously HATE it.  I feel terrible every time I give them to her.  I give her a very strong probiotic in the morning to help, but it does not make me feel much better.  I know they are needed because we have to protect her kidneys, but I worry about it all the time.  What if she ends up with pneumonia or something huge, and we cannot fight it because of an antibiotic resistance?  I know questioning the future and worrying about eveverything will not help, so I am choosing to remain positive and hope for the best.  She is in God's hands.  We would really appreciate your prayers, though!  Please pray that Madi's kidneys continue to grow.  Pray also that the reflux goes away on it's own.  Thanks so much!

Sometimes things seem overwhelming

(Please excuse my spelling errors and lack of capital 'i's. i am working on a computer with a broken keyboard. Madi gave my laptop a little shove off the counter and it no longer works)

As many of you know, we are trying to buy a new house. We found one that we both absolutley love, but the problem is that we want to be able to live without relying on David's bonuses. David's bonuses are based on his trading in the market. Some quarters can be amazing. Other quarters David goes in the negative, as do his bonuses. He's done great and God has really blessed us, but it is not income we can rely on. We thought we would be able to afford the house we put an offer on based on his base salaray, and last month, though it would have been tight, we could have done it. This month, things look very different. Right now we are really searching out what God wants us to do. There have been other houses we loved and every time, the door gets shut. We've been looking since May, living with my parents, and we are just very frustrated right now.

So what has happened in this past month to change our monthly expenses so much? The care we rely on for Madi is changing. To start with, Madi had AHCCCS (state healthcare) for one year, which has ended. They picked up what our insurance didn't, which was amazing considering our three big, and expensive, hospital stays. You do not get on AHCCCS for disability, only for financial need, which we do not have, so getting back on AHCCCS at this point is not possible, though if we pay out enough in medical expenses, it may be. Next up comes CRS (children's rehabilitative services). Because we are no longer on AHCCCS, we are no longer accepted at CRS, which means no more help with her many doctor's visits. And, lastly, comes DDD (Department of Developmental Disabilities). Since the state is broke and they do not know where to go for their money, they are switching to a sliding scale paymetn system, which means instead of picking up our $35 co-pays, three times a week for Madi's therapy sessions, they will pick up a portion of those and we will pay a portion (or all). Also, Tami, Madi's physical therapist, is out-of-network and is not paid for by insurance until we hit double our diductible, or $5,000, and DDD was paying for her to come until our insurance kicked in. Madi does not yet qualify for Arizona Long Term care as Spina Bifida is not a disability that automatically qualifies you, like autism and other disabilities do. She will eventually get in, unless it goes bankrupt like so many other programs, but it probably won't be for another few years.

So what does all this have to do with our house, you ask? We had already budgeted for our health insurance, which is $400 a month. We also budgeted for $35 co-pays for Conner's doctor visits and our doctor visits. We do not have dental or vision insurance, so that is also something we had budgeted for. We had not, though, budgeted $35 per therapy, three times a week ($105 a week total, $35 doctor co-pays every time we go in (some weeks we don't, some weeks we have 4 visits), money for AFO's, wheel chairs, prescriptions, walkers, standers, and all that other good stuff. Based on that, we need to budget in around $500 a month extra for medical expenses, plus have an emergency medical fund for hospital visits and equipment she will need, as well as money for making whatever house we get handicap accessable. That $500 is just bare bones medical, not including heatlth insurance. Realistically we'll be more around $600 a month. That, combined with what we pay for health insurance is, literally, a third of David's monthly pay.

Looking at all of this has made us realize a few things.

#1- We are very thankful for the assistance we were getting.

#2- We need to be very careful with our spending. We live pretty cheaply as it is, but we need to cut back more. We don't eat out often, i don't get my hair, nails, or toenails done, we don't go to the movies, we try to buy the kids clothes used, but we have this crazy Costco addiction ;). We have the Dave Ramsey system and are going to sit down this weekend and figure out a budget. We are going to stop using credit cards (we pay them off in full every month to get the cash back, but i know this causes us to overspend) also. We are going to an all (or mostly all) cash system so we can monitor our spending very carefully. We hope to be able to cut some corners and make it work so that we can get this house without relying on bonuses, but because of the additional $500 a month (roughly) we will need for medical, i am not sure this is possible.

#3- We are so very thankful God has blessed David with a good, stable job.

#4- it is very hard to raise a special needs child without government assistance, which is a fact that i absolutely despise. i do not want to NEED help raising my child. i don't want to have to rely the government for her care. i do not want other people getting to decide her quality of care or quality of life.

#5- We need to do some big time praying!

#6- We may need to find another, and cheaper house. One reason why we loved this house is because it is a custom home and, therefore, has wider hallways for Madi to navigate through. The kids bedrooms also have a jack-and-jill bathroom, which would be so very amazing for Madi to have. i would love for her to have a bathroom close and feel it will help make her much more independent, which, in turn, will boost her self-esteem. There is also a formal living room that i would be able to homeschool out of, as well as a den for David to work out of, as he works from home 4 days a week. So, while we may not NEED those things, they would make life so much easier. We are really bummed we may need to walk away from this one.


We are supposed to hear back about the house any day now, and really need to know what we are getting in to first. As i sit here typing this and look down at Madi's beautiful sleeping face, all i can think of is how much she is worth it all. God has always taken care of us and we know He is not going to stop now, but we need to make wise choices with the resources He has blessed us with. We are praying really hard right now for direction with where He wants us to go. Please pray for direction as we go through our budget and make these decisions.

There always has to be a glitch...

(Sorry this is sideways. I took it with my phone and can't figure out how to edit it to turn it! GAH! It is mighty cute, though ;))

Today I called to check on Madi's stander and got some not-so-good news. The stander was finished, however, they were waiting on approval from CRS to be able to give it to me. CRS stands for Children's Rehabilitative Services, and it is the local clinic where all the doctors go to help children with special needs. It's like your one-stop-doctor-shop. They had already tried to get CRS's approval once and the stander was denied. They said this happens every time they try to approve something like this and that eventually they will accept it because they have to. So, because of some technicality, it sits there and we do not get to use it yet. Here's the kicker, though. We are self-pay through CRS because we are not on AHCCCS or Arizona Long-Term Care. All this means is we pay the discounted AHCCCS rate for our care instead of the standard rate. We still pay for all of her care, though. It goes to insurance first, then the rest comes to us. We also have our $35 co-pays (which let me tell you, those add up fast at 1-4 times a week, plus prescriptions and/or natural remedies), so it's not like this is coming to us free from CRS. That is not the case at all. The reason they deny it infuriates me in itself. It is assumed that Madi will need a wheel chair. It's cheaper, in the short-term, to stick madi in a chair than it is to give her the adaptive equipment to walk and the chair. In the long run, though, Madi walking will cost a substantial amount less. It is better for her muscles, circulation, self-esteem, cognitive development, etc..... to be standing. I think the hardest part of all is waiting while another person gets to decide my child's quality of life and what she "can" do. So, for now, we wait. I know it's all God's timing (but hurry up already!!) and will update you when it finally comes. Oh, and you may want to pray for a dash of patience for me ;).

Madi has her first casting

Today Madi got her first cast to correct her clubbed foot. Dr. Segal uses the ponsetti method of casting which involves slightly moving the foot a little at a time and releasing the heel cord to correct the foot. We waited 3 hours at CRS (Children's Rehabilitative Services) before we even got in to see the doctor but both Madi and Conner did great! Conner was very sweet and kept kissing "sissy" to make sure she was ok. He was a bit sad that he didn't get a cast himself, but I wouldn't be surprised if our crazy little man ended up with some kind of cast at some point in his life. Madi is doing great with her new cast and is finally taking a nap after a long day! She did take a short nap all wrapped up on mom, so thankfully she remained pretty happy throughout the whole thing. We go back in two weeks to get a new cast put on. We are very thankful to have the casting option available to us so that another surgery is not required!

The doctor says things look good!

This is an old picture, but I love it, so I just had to throw it in ;)

Last week we went to the Children's Rehabilitative Services (CRS) clinic and saw Dr. Zuniga, Madi's urologist.  They took an ultrasound of her kidneys and bladder (and I almost got in a fight with a nurse... long story, but let's just say, you don't mess with my child ;)) and things are still looking good.  Though she does not function perfectly in those areas, there is not too much pressure and we do not need to start catheterizing her, which was awesome news!  My prayer is, and always has been, that her bladder work well enough to not have to cath her.  We go back for another ultrasound in 3 months.  

Today we went to her normal pediatrician, Dr. Nemivant at Pediatrix.  Madi's weight is in the 5th percentile, her height in the 50th, and her head in the 55th.  Because of her hydrocephauls, her head has always been a bit larger, though it's not noticeable.  He was not worried about her weight, either, which has always been in the lower percentile.  I asked him to swab her diaper rash and see exactly what it is so that we can wipe it out.  We're waiting for the results back but he prescribed an antibiotic that is supposed to help in the meantime.  We have yet to Vaccinate Madi and I'm not sure if we ever will, or what we will vaccinate for, so our check was fairly quick.  He said Madi is looking great, though we already knew that ;)!