Standing, here we come!!

Today was an appointment I am VERY excited about! Madi wants to be standing and upright so badly, but she just cannot make her little body do it. Because she does not have any movement below the hips, she is unable to support herself. Today we went in to get fitted for a parapodium, which is a device that will help her hold her body upright so that she can stand. She will also be able to move around with it. She won't be given a walker yet, since that would limit her ability to twist her body from side to side, but will be given a walking-stick type of device instead. Tami, her physical therapist, will work with me and teach me how to help her get around in it. Ron, from Hanger, is hand-making her parapodium for her. Don't ask me what it's going to cost because I don't even want to know ;). Tami and Ron talked so that he would know just how to design it. Unfortunately, it is not something Hanger normally makes, so he will have to order some supplies and we will not have the stander until right around Christmas time. I am so excited for her to finally get to be at her peer's level, though, and it is well worth the wait!!!. Watch out world, here comes Madi!!!

P.S. In case you are wondering about the photos... the first one is the mold they made of Madi's torso. I couldn't take a picture while they made it because I was helping to hold her and keep her happy. The second photo is of her getting measurements done.

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."

Our Kiddos Need You!

This is for all of my fellow Arizonians :). There are rumors that they are considering further cutting back on services and funds at the Department of Developmental Disabilities (DDD)/ The Early Intervention Program (EI). The news of this saddens and infuriates me all at once. Many families cannot afford the therapies their children need without DDD coverage. This doesn't just effect families of children with a disability. This effects us all. Studies have shown that early intervention saves enormous amounts of money in the long run. Our children need help when they are most vulnerable and developing the fastest. Please take a minute to write a letter to our legislators, send an e-mail, or make a phone call. Let your voice be heard... our children are not numbers, they are people, and they are our future!



Here is the information I received on this matter:

Attention Parents, Consumers and Providers

As you may be aware, the Arizona Legislature is trying to establish a new budget. Unfortunately they are considering cutting the Division of Developmental Disabilities services. They are actually considering stopping all respite, habilitation and attendant care services. Senator John Nelson’s office on October 22nd informed agencies that the only way to save the program is to get as many people to email, write letters and call their Legislators to let them know that they will not get your vote if they cut the budget to the Division of Developmental Disabilities.

We all need your help! Every person makes a difference. Please email, write or call as many Legislators as possible. They are keeping count of how many responses they get. These people desperately need your help. I am asking everyone I know to please forward this request to everyone they know and ask them to keep passing it on. Each one matters.

Below are the addresses, phone numbers and emails of the state legislators in both the senate and the house. If you don’t know your district, you can call or go online to http://www.azleg.gov/MemberRoster to find your specific representative. You can notify anyone on the list, even if you are not in their district. They all represent Arizona.

Happy Birthday Miss Madi!

We cannot believe you are one year old today! Wow, has the time flown by. It has been a wonderful first year. We've had our challenges and setbacks, but none of those matter. We just wanted you to know that we are so thankful and blessed to have you in our lives. You are such a joy and inspiration. Your dedication and strength, even at a year old, is absolutely amazing! Papa is right, you will change the world! We all love you so much!

Round 3...

A few days before Disneyland we got Madi's third, and hopefully final, shoe for her clubbed foot. This is a custom AFO made by Hanger. The man who made it, Ron, is highly recommended and has a lot of experience with children that have spina bifida. He is a very gentle and kind man. He did an awesome job and we are praying this one works! Conner picked out a cute little heart print for her and she looks adorable in it, of course. We still get a million questions and comments as people don't understand why she needs it, but such is life. I'm so thankful to finally have her in something that doesn't bruise and hurt her little foot!

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.

My little baby's first sickness

Though Madi has been sick in the past, it was always what I call 'shunt sickness', because it was always something to do with her shunt. This time, though, Madi is just plain sick. She's been sick since Monday after catching her brother's swine flu (I think, but it hasn't been tested) bug. She's been spending a lot of time wrapped up on momma, which is by far the best place to be when you are feeling sick. Today, though, all she wants to do is sleep and her fever is back. We have spent hours and hours in this same position. She was awake long enough to go get her third shoe for her foot (pictures to come when she is feeling better), but that is about it. If she does not improve by tomorrow, I will be taking her in to the doctor. Please keep my little angel in your prayers!