Friday, December 4, 2009
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.
Thursday, December 3, 2009
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:
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."