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!!

To all my prayer warriors....

A very special little girl is going through surgery right now for a spinal shunt and detethering.  Surgery is planned to take 3-4 hours!  Please pray for Ciaran (here's her blog http://cjrileyspage.blogspot.com/) as she goes through this.  Pray that God will guide Dr. Moss's hand and that he will protect Ciaran.  Pray for minimal pain and a quick recovery.  Pray that the shunt works correctly and that it stays working and infection free.  Pray that this detethering works and that she won't need another.  She has had too many already!  Thank you for your prayers!

Update- She is out safely!  YEAH!

And we are home!

Thanks for all of the prayers (you know how much we covet those :)).  The drive went amazingly well, though the shunt series and cat-scan, not so much.  The results were great, but Madi was NOT happy to have them done.  I held her hand and sang to her as I wiped her tears and told her I promised it wouldn't hurt, but it didn't make a difference.  Big scary machines are just not on her top 10 list this year.  We both survived, though, and Dr. Moss said everything looks great!  There are no blood clots or areas he is concerned about, and though there is more fluid on the right hand side, he is not worried.  It was there the last 2 times they checked too.  I told him next time I was not going to come right before a Disneyland trip we had planned, like we've done the last two times, because I always get nervous we'll have to be admitted in to the hospital and miss the trip.  We always have a plan of how David and Conner will go and we will meet up afterwards if anything isn't right, blah blah blah.  Anyhow, I brought Madi's wheelchair and she had a ton of fun showing off.  She did turns and went forwards and backwards and tried not to smile when everyone said they were amazed at how great she was doing.  She got told she was beautiful about 200 times, and that she was smart about another 200 or so, and she enjoyed every second of it!  When she would wheel past someone new, she would go really slow until they said something to her about how cute she was or how great she was doing.  Then she would smile and zoom off to the next person.  No one believed that she was not going to be two until next month and all the nurses said they have never seen someone so young move around like that.  We already know she is amazing, of course, but it was fun watching how excited she got when someone else told her (she's used to hearing it from us ;)).  I'll be back later with a few photos. 

A quick update and a small call for prayer

Today Madi had her first wheelchair accident.  She was trying to get into the grass/sand area at my parent's house and tipped forward when she was coming off the sidewalk.  Thankfully she was strapped in, but it did scare her a lot.  She got a little egg knot and a little scratch on her head :(.  Poor baby.  She, of course, needed a few mommy kisses and hugs, but then felt as good as new.  She got back up, too, and didn't let her fall keep her from trying again!  Such a little fighter she is!

Tomorrow Madi has an appointment to get a shunt series and a cat scan to see how her shunt is doing.  Afterwards she will see her neurosurgeon, Dr. Moss.  It's about a 40 minute drive, which isn't too big of a deal, but I will be doing it alone with a girl who hates the car, so wish us luck!  I will be packing snacks and signing times dvds for sure!!  Please pray her shunt is looking well and doing it's job.  Madi hasn't been sleeping well at night lately, and of course, I always worry.  She also tells me her head hurts.  Her fontanell feels fine, though.  She could be teething, and also has a small cold, so that could be why too.  In all fairness, she also says her arm, teeth, stomach, and anything else she knows how to name hurts, so it might be nothing.  Anyhow, please keep my little gal in your prayers and I'll update when I can.  Thanks!

YEAH!! I am SO relieved!

 I talked to Dr. Moss's office today and Dr. Moss has changed where he sees his patience, however, he still has rights at Phoenix Children's Hospital. So basically, we can see him for our regular appointments in his new office, but still request him in case of an emergency at PCH. YEAH!! I am so happy! All that worrying for nothing. I know it's all in God's hands, and worrying does nothing, but I still give it a go from time to time ;).

Not so fond of the birds at the Ostrich farm

I am so hearbroken over this

Dr. Moss, Madi's neurosurgeon, is apparently no longer at Phoenix Children's Hospital. On Friday, I got a letter saying that as of March 10th (and the letter came mid April), Dr. Moss was no longer in the practice. My mind is swarming with questions... Where did he go? Why did he leave? Was it voluntary? If he knew it was coming, why did he not tell us at our last appointment? Is he at a new practice? The two most important things for Madi, I feel, are her physical therapist and her neurosurgeon. Of course, her neurologist, urologist, orthopedic surgeon, and other caregivers are extremely important, but the neurosurgeon does all the big, tough, scary operations. Dr. Moss has been there for us from the beginning. He fought for us to have a vaginal birth, to breastfeed right after her surgery, to wear her in a (good supportive, not Bjorn-ish) baby carrier, and so much more!  He has been AMAZING!!  What will we do?!?!?

* UPDATE BELOW ;)

I do have some good news to share.  Madi's very awesome great-Aunt is sending her some money for an Amtryke.  When we add that to her Amazon.com associates account money, as well as the money from her Human Tribe Project necklaces ... ... we have enough to purchase her an Amtryke!!!!!  WOOOO HOOOOO!!!  I think this is such a big important step for both her physical and emotional well-being.  I am going to have Tami, her physical therapist, help me order it on Tuesday.  I cannot even tell you how excited I am!  Thank you to everyone who purchases through her link. I know it seems like such a small thing, but it is HUGE!!!!  THANK YOU!

 

Update... Turns out that due to some politics, Dr. Moss chose to leave Phoenix Children's Hospital and is now at Cardigan Children's hospital, where we now see him.  Turns out we didn't lose him after all!!

Please keep Madi in your prayers....

Conner took this picture of Madi and I.  He's quite the little photographer!

I think I posted before that Madi's renal reflux went from a level 2 to a level 5.  That is pretty much the reason that we are cathing her now.  One reason for the change could be tethered cord, which is essentially where the nerves grow in to the scar tissue, causing problems as the child grows.  Here's a great explanation:

http://www.spineuniverse.com/conditions/spina-bifida/spina-bifida-tethered-spinal-cord

At birth, the spinal cord is normally located opposite the disc between the first and second lumbar vertebrae in the upper part of the lower back. In a baby with spina bifida, the spinal cord is still attached to the surrounding skin, preventing it from ascending normally, so the spinal cord is low-lying or tethered. Although the skin is separated and closed at birth, the spinal cord stays in the same location after the closure. As the child continues to grow, the spinal cord can become stretched, causing damage and interfering with the blood supply to the spinal cord. This can result in back pain, leg pain, changes in leg strength, progressive or repeated muscle contractions, orthopedic deformities of the legs and scoliosis, and bowel and bladder problems. A definitive diagnosis of a tethered spinal cord is made through diagnostic tests.

The shunt is checked through a computed tomography (CT or CAT scan) or magnetic resonance imaging (MRI). In some cases, the shunt is tapped to assess shunt function. If there is any question about shunt function, the neurosurgeon may explore or revise the shunt, before considering operating on the spinal cord.
If the shunt is working well, usually an MRI of the spine is done to exclude other problems. Additional studies such as a Manual Muscle Test (MMT) and special bladder studies (urodynamics) may be prescribed. These will be compared with prior studies to assess changes and to give a baseline against which to compare after the surgery. Untethering is generally performed only if there are clinical signs or symptoms of deterioration.


The surgery involves opening the scar from the prior closure down to the covering (dura) over the myelomeningocele. Sometimes a small portion of the bony vertebrae (the laminae) are removed to obtain better exposure or to decompress the spinal cord. The dura is then opened, and the spinal cord and myelomeningocele are gently dissected away from the scarred attachments to the surrounding dura. Once the myelomeningocele is freed from all its scarred attachments, the dura and the wound are closed.


The child usually can resume normal activities within a few weeks. Recovery of lost muscle and bladder function depends upon the degree and length of preoperative implications. The combined complication rate of this surgery is usually only 1 to 2 percent. Complications include infection, bleeding, damage to the spinal cord or myelomeningocele, which may result in decreased muscle strength or bladder or bowel function. Many children require only one untethering procedure. However, since symptoms of tethering can occur during periods of growth, 10 to 20 percent require repeated surgery.



Although having a tethered cord (Basically, all children who have Madi's form of SB do have tethered cord, it's just not always problematic) would give us answers to why her bladder problems are worsening, it's not a good answer, because it means a yucky surgery and hospital time.  Though I would love to know why her bladder condition is getting worse, I'd also hate to see her undergo yet ANOTHER surgery and more anesthesia, so I'd really hate for it to be tethered cord.  We go in for a full spinal MRI on Wednesday at 10:30.  Madi will go NPO earlier that morning and will have to be sedated (put under anesthesia) for the MRI because it is a long 45 minute one.  They will let me be in the room while she is put under, then again when she is woken up, but I will not be able to be in the MRI room (though I plan to try and push for it again) during the procedure.  I hate that they have to put her under for it.  When they are doing a 'big bang' MRI to check her shunt, they allow me to go in the MRI machine with her.  Because this one is so much longer, though, and they have to do anesthesia, that will not be a possibility.  I am really sad about that, but it is what it is.  We then have an appointment with Dr. Moss, her neurosurgeon, on the following Tuesday to discuss the results.  I need to call and see if we will be going straight to surgery that day if it is tethered, and if I need to pack and prepare for that, or if we schedule surgery, go home, and come back.  Please keep our little Madi in your prayers this week.  We will keep everyone updated.

Such great news today!!

Though it is too easy to say when things are going well, GOD IS GOOD! All the time! We went for a routine MRI today, as well as a routine neurosurgeon appointment. The MRI went smoothly. They allowed me to get in the MRI machine with Madi so that they did not have to sedate her. I rubber her little soft face and sang to her while they did what the call a "big bang MRI", which only takes about 5 minutes. It was a bit eery feeling to be crammed in such a small, enclosed space, but I was thankful to be there! Madi did great because she knew momma was right there with her the whole time. She wasn't a huge fan of the ear plugs or the fact that she could not move her arms, but she really did great! I got a little nervous for the appointment because Mary, Dr. Moss's nurse practitioner said she would look at the MRI and be back, but kept not coming back. I was starting to get worried, especially considering we are supposed to be on a plate today to head to disneyland. She said there is more fluid in the left side, just like there was before, but things looked good. The reason it took so long is because she called Dr. Shaffron and had him compare her old MRI to her current one. Things looked pretty much exactly the same. THANK YOU GOD!! Then she said the most amazing thing..... we will see you in 6 months! Now, for some people, 6 months might not sound like a big thing, but to us it is HUGE. We had a very rough start with shunt problems and within the first 2 months had spent about 1 month in the hospital. Those were some very rough times. For now, things look great, and I couldn't be more thankful. We're taking it one day at a time.

Raising two special kids!

Last Saturday we went to the Raising Arizona Special Kids day at McCormick Ranch Park. We all really enjoyed ourselves and it was awesome to get a free day out to have some fun.  Being there just reiterated how blessed we are.  Compared to so many other Children, Madi's challenges (I always struggle with finding a word to put there.  I guess technically it's a disability, but that just sounds so inhibiting.  

On another note, Madi had a check-up with Doctor Moss at Phoenix Children's Hospital this week.  Her head measurements are coming back normal, her fontanel feels good, and her shunt appears to be working correctly.  We had a few really big bumps in the road in the beginning, but we are hoping to be past those now.  Dr. Moss said that once you have a shunt working well for about two years, you are good to go!  We are praying that this shunt is the one :).  Madi is continuing physical therapy with Gail at Aspire therapy and is doing well.  I am looking for an in-home physical therapist, though, and hope to have one soon.  We love gail, but the 40 minute drive, one way, to see her every week is getting old fast.  Research shows that children under 3 do best in their natural setting, so ideally, that's where we would like to be.  Madi also started receiving services from a developmental specialist.  She's getting a lot of help and is doing great!  She's a very happy, healthy, and strong little girl!  

I don't update about Conner much, since this blog was designed to keep people up to date on Madi, but he is doing very well also.  He is getting his last set of molars (for a while) which has made life interesting.  He was having a really hard time sleeping so our nautropathic doctor, Dr. Kail, at Arizona Advanced Medicine has us giving him small doses of melatonin and it's helping so much!  Hyland's Teething Tablets are a God-send too!  I'm in the process of making Conner a cape with Spiderman on it and he's thrilled!  He's a huge Spiderman fan!  Right now he's a fan of Spiderman, the letters 'o', 'a', and 'i', and the color blue.  He's a really smart kiddo and nothing gets passed him!  He is such a neat little boy and he makes life fun!

God blessed us with two beautiful, fun, amazing children and we are so thankful for that.  We truly are raising Arizona's special kids!