Madi and Grammy at one of Conner's preschool parties
Thursday, February 24, 2011
Asking for a favor from all my local families :)
We just found out that the orphanage director was pleased with our interest in Manasa (the one year old girl in India that has spina bifida and needs a home), but wants to see our homestudy ASAP, so we are trying our best to get it done quickly. Anyhow, I was trying to think of some fundraiser ideas for all the fees (aprox. $25,000 total, but not all at once) and thought of having a big garage sale. If anyone has things around their house they were going to donate anyway, I'd love to take them off your hands for a big garage sale to earn money towards the adoption. I can come pick everything up. We will be having it April 15th and 16th. I won't have tax right-off forms, but I will have lots of thankful smiles :). Also, if anyone has an ideas for fundraising for me, please let me know :).
Tuesday, February 22, 2011
My intimidation
Yesterday David and I met with a wonderful couple that go to our Church, Redemption, here in Phoenix. They adopted 3 little girls from Haiti and are an amazing family. We asked them lots of questions about adoption and had them ask us a lot as well. It was really reassuring for us and confirmed that we both are ready and are feeling God tugging at our hearts.
I have been worried that David was not in it the same way I was. I have always known that adoption was something I felt very strongly about. It is something that I have always known I wanted to do. It is something that we discussed long before getting married (notice the many 'I's here). David is a quiet guy who likes to joke around but has a hard time expressing his feelings. I can usually read him very well but I was having doubts about whether he was fully on board. I have always told him that this cannot be a "Jamie" thing. He cannot go along with it because he loves me and wants to support me. He has to be in it 110% and it has to be something he desires to do as well. He has to know, for himself, that this is something God is calling us to do. We have been talking about adoption so much lately and he has been supportive and telling me he wants to do this, but there was still that little seed of doubt.
After we left our meeting with the couple from our Church, David asked me how I thought it went and we discussed the meeting. During our conversation he said that he does want to start the process and that he thinks we should adopt. I told him that I knew I felt lead to adopt, but that he had to feel that way too. I told him, again, that it was ok if he did not feel that way, and that I would still love him. He got very serious, and a little tender-hearted, and told me that he felt God tugging at his heart too. He knows this is what God wants for us. I cannot really explain how encouraging those words were for me. All the doubt was gone and I knew that he was serious. I am so thankful God gave me a husband with a heart as big as mine! So that is that. We are officially starting the process. Wow!
Tonight we came home from dinner and all of the paperwork we need to start the process and begin our homestudy through Oasis was in the mail. I started reading through everything so that I would know what needed to be done first (apparently our fingerprints). It was then that my heart started to beat a little faster. The realization sunk in that it does not matter if we believe we will be amazing parents for another child. What matters is if they believe we will be. Ah, that is so much pressure! I know, beyond a shadow of a doubt, that we are great parents. I know that we will be able to provide a stable, loving, and caring home. I know we will be able to deal with whatever is thrown our way. I know Conner will be a compassionate and loving brother. I know Madi will love another child as she does her brother and will be a great sister. I know all of this, but someone who does not know us has to decide it for us, and that fact is a little intimidating! I know God has a plan and already has this all worked out for us, and am working very hard at reminding myself of that. What is meant to be will happen, and me worrying will do nothing to change that. There is one amazing thing I can do, though, and that is pray, because I know that God listens. And on that note....
I am thankful for each of you out there who read our blog and keep us in your thoughts and prayers. I am thankful to have you loving us, supporting us, and walking this journey with us. If you can keep our new journey in your prayers, we would really, really appreciate it!
I have been worried that David was not in it the same way I was. I have always known that adoption was something I felt very strongly about. It is something that I have always known I wanted to do. It is something that we discussed long before getting married (notice the many 'I's here). David is a quiet guy who likes to joke around but has a hard time expressing his feelings. I can usually read him very well but I was having doubts about whether he was fully on board. I have always told him that this cannot be a "Jamie" thing. He cannot go along with it because he loves me and wants to support me. He has to be in it 110% and it has to be something he desires to do as well. He has to know, for himself, that this is something God is calling us to do. We have been talking about adoption so much lately and he has been supportive and telling me he wants to do this, but there was still that little seed of doubt.
After we left our meeting with the couple from our Church, David asked me how I thought it went and we discussed the meeting. During our conversation he said that he does want to start the process and that he thinks we should adopt. I told him that I knew I felt lead to adopt, but that he had to feel that way too. I told him, again, that it was ok if he did not feel that way, and that I would still love him. He got very serious, and a little tender-hearted, and told me that he felt God tugging at his heart too. He knows this is what God wants for us. I cannot really explain how encouraging those words were for me. All the doubt was gone and I knew that he was serious. I am so thankful God gave me a husband with a heart as big as mine! So that is that. We are officially starting the process. Wow!
Tonight we came home from dinner and all of the paperwork we need to start the process and begin our homestudy through Oasis was in the mail. I started reading through everything so that I would know what needed to be done first (apparently our fingerprints). It was then that my heart started to beat a little faster. The realization sunk in that it does not matter if we believe we will be amazing parents for another child. What matters is if they believe we will be. Ah, that is so much pressure! I know, beyond a shadow of a doubt, that we are great parents. I know that we will be able to provide a stable, loving, and caring home. I know we will be able to deal with whatever is thrown our way. I know Conner will be a compassionate and loving brother. I know Madi will love another child as she does her brother and will be a great sister. I know all of this, but someone who does not know us has to decide it for us, and that fact is a little intimidating! I know God has a plan and already has this all worked out for us, and am working very hard at reminding myself of that. What is meant to be will happen, and me worrying will do nothing to change that. There is one amazing thing I can do, though, and that is pray, because I know that God listens. And on that note....
I am thankful for each of you out there who read our blog and keep us in your thoughts and prayers. I am thankful to have you loving us, supporting us, and walking this journey with us. If you can keep our new journey in your prayers, we would really, really appreciate it!
Thursday, February 17, 2011
A Cute Book
I first ran across the book Zoom by Robert Munsch at the Internation Reading Association conference my school sent me to some years back. He was signing books so I had him sign it to my class. I stopped teaching shortly after I had Conner and kind of forgot about it. After I had Madi and she got her wheelchair, I remembered that I had it. I wish I could have had it signed to Madi, instead of my students, but that's ok, it's still cool.
The book is about a little girl who picks out a wheelchair and finds this amazingly fast one that they let her try for free for one day. She takes it on the road and gets a speeding ticket. Her parents say she has to take it back.... until she uses it to help her brother. At the end of the day, though, the little girl decides the chair is just too slow and that it needs to go back. It's a very cute book!
Monday, February 14, 2011
A story of love
In the spirit of Valentine's Day I thought I'd share my and David's love story, as it is pretty cute and mushy. David and I were in the same first grade class, though we do not remember each other that far back. If you remember this ornament I posted in December...
... those are from our the first grade teacher that we shared. Both of our moms kept them for us. We have others that are the same too, but these are the earliest.
David and I became friends in sixth grade, and that is where our story really starts. We used to hang out together, get snow cones at the local shaved ice place together, and we even played a clarinet duet together (we got third place :)). We hung out a lot and always felt different around each other, like we had a future together that we did not know or understand. I thought the idea of ever kissing him was yucky, though, because, you know, boys have cooties. I remember that David really wanted to kiss a girl, so my friend Becca and I used to tell each other to kiss him. I remember saying that was really gross and that I just could not do it. In junior high our school did a fundraiser where you took a compatibility test and it told you who you were most compatible with. Yes, David was at the top of my list. We are over 80% compatible. I recall getting the results and having a good laugh. Boy, that computer had NO idea what it was talking about, none at all! I had actually forgotten all about this until I was packing up my room right before our wedding. I found it and thought it was pretty amazing. I have always wanted to write the company and tell them just how right they were! I'll have to try to find it and scan it in for you. I put it out at our wedding because it was just too ironic.
David and I became very close friends our sophomore year in high school. We hung out with all the same friends and saw each other all the time, but were both seeing other people. The summer before our Senior year we were up late talking on the phone, which is something we did quite often (I hate to tell you this mom, but I'd hide in the closet with the lights out so you did not know. I was quite tricky.). I was leaving for Australia the next morning with People to People Student Ambassadors and would be gone 2 1/2 weeks. He asked me if there was anyone I liked and I kind of giggled and asked if there was anyone he liked, and he kind of giggled. Eventually someone admitted that they liked the other person, and that was that. We met for an early breakfast at McDonalds, talked by the lake, and kissed each other. I thought it was the weirdest kiss in the world because we were such good friends, but never really saw ourselves becoming more. I went home and boarded a plane for Australia. David and I talked a few times while I was gone and wrote each other cards. Things were sticky, though, since I had just broken up with his best friend (not a good guy for me!) and that was still new. I don't remember when we officially started dating, but it was shortly after I returned.
We had our ups and downs, and had a lot of growing up to do, but we stayed together through it all. After high school we started college and decided we wanted to finish before we got married. We dated 4 years and then started talking about getting engaged. He kind of talked about it like it was still very far in the future, but changed his mind after I left for Costa Rica to study Spanish for 2 1/2 weeks. While I was gone he talked to my parents (who had him over for dinner and talked to him for 2 1/2 hours, which I think is funny because they both really loved David, so I know they were just doing their job) and asked me to marry him about a week after I returned. We had a year engagement as we finished up school. I was insanely busy student teaching, going to school, writing my honor's thesis for the honor's program, working double shifts waitressing on the weekends, and planning the wedding, but we made it work. We got married two weeks after we graduated from college on May 31, 2003.
It has been an amazing 7 years, and God has blessed us tremendously! I am so thankful that God brought me such an amazing man and look forward to what the future has in store for us.
David and I became friends in sixth grade, and that is where our story really starts. We used to hang out together, get snow cones at the local shaved ice place together, and we even played a clarinet duet together (we got third place :)). We hung out a lot and always felt different around each other, like we had a future together that we did not know or understand. I thought the idea of ever kissing him was yucky, though, because, you know, boys have cooties. I remember that David really wanted to kiss a girl, so my friend Becca and I used to tell each other to kiss him. I remember saying that was really gross and that I just could not do it. In junior high our school did a fundraiser where you took a compatibility test and it told you who you were most compatible with. Yes, David was at the top of my list. We are over 80% compatible. I recall getting the results and having a good laugh. Boy, that computer had NO idea what it was talking about, none at all! I had actually forgotten all about this until I was packing up my room right before our wedding. I found it and thought it was pretty amazing. I have always wanted to write the company and tell them just how right they were! I'll have to try to find it and scan it in for you. I put it out at our wedding because it was just too ironic.
David and I became very close friends our sophomore year in high school. We hung out with all the same friends and saw each other all the time, but were both seeing other people. The summer before our Senior year we were up late talking on the phone, which is something we did quite often (I hate to tell you this mom, but I'd hide in the closet with the lights out so you did not know. I was quite tricky.). I was leaving for Australia the next morning with People to People Student Ambassadors and would be gone 2 1/2 weeks. He asked me if there was anyone I liked and I kind of giggled and asked if there was anyone he liked, and he kind of giggled. Eventually someone admitted that they liked the other person, and that was that. We met for an early breakfast at McDonalds, talked by the lake, and kissed each other. I thought it was the weirdest kiss in the world because we were such good friends, but never really saw ourselves becoming more. I went home and boarded a plane for Australia. David and I talked a few times while I was gone and wrote each other cards. Things were sticky, though, since I had just broken up with his best friend (not a good guy for me!) and that was still new. I don't remember when we officially started dating, but it was shortly after I returned.
We had our ups and downs, and had a lot of growing up to do, but we stayed together through it all. After high school we started college and decided we wanted to finish before we got married. We dated 4 years and then started talking about getting engaged. He kind of talked about it like it was still very far in the future, but changed his mind after I left for Costa Rica to study Spanish for 2 1/2 weeks. While I was gone he talked to my parents (who had him over for dinner and talked to him for 2 1/2 hours, which I think is funny because they both really loved David, so I know they were just doing their job) and asked me to marry him about a week after I returned. We had a year engagement as we finished up school. I was insanely busy student teaching, going to school, writing my honor's thesis for the honor's program, working double shifts waitressing on the weekends, and planning the wedding, but we made it work. We got married two weeks after we graduated from college on May 31, 2003.
It has been an amazing 7 years, and God has blessed us tremendously! I am so thankful that God brought me such an amazing man and look forward to what the future has in store for us.
1 Corinthians 13:4-8a
Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.
Sunday, February 13, 2011
Well, we have an answer, sort of
On Friday I found out that the little girl we had completed a pre-adoption packet for will be placed with another family. They are actually working with two other families, and I'm not sure when/how they will decide who exactly gets to add her to their family. They are further along with their paperwork then us, and I knew that it would happen like this, but I'm still a little sad. When you see a little face as beautiful as hers and you start to think about what your life would be like with her in it, you start to bond with (even if it's just a one-sided bonding) and love that little child. Even though I knew this was a very real possibility, I am sad. I just had this feeling she would be part of our family. I truly believed God placed her in our hearts for a reason, and that she would be ours. I am so, so, so thankful that she is getting a home, one that she so greatly deserves. Please continue to pray for her and for her urinary issues as she is not out of the clear yet and adoptions from India take a loooooong tI'me to complete. Pray for her new family that they will be fully prepared to handle her issues and help her. Pray also that the families will be able to get the funding and things they need to bring her home.
In other news, they sent me the information on another little girl in India, one who is one year old, and have asked if we would be interested in adopting her. Oh my is she a cutie with huge brown eyes and beautiful long lashes. They say she has spina bifida and in some of her earlier pictures you can see a large lump on her back, however, I have never seen a lump like hers before. It doesn't look like what Madi had on her spine, and it looks more to the side then straight in the back. It's very large, more like a baseball. We are also not sure if it has been fixed yet or not. I have sent her files on to Madi's neurosurgeon, Dr. Moss, and her urologist, Dr. Zuniga, and am (I'm)patiently waiting for their reply. I need to compose a list of questions to ask the orphanage, so I can ask about her back and what has or has not been done with that. We also got information in the mail about what we need to do for our homestudy and the such. They sent me an application that I need to return with a $75 check. I checked our credit card (we pay it off in full every month as we are on the cash budget but use it for bills and gas and the such to get the cash back) and low and behold we had enough for $100 cash back, so there is the money for that! Yeah! We also should be getting a tax refund, so that will give us the $1,800 for the homestudy. Awesome!! David reminded me tonight that adopting a child will cost as much as a sports car, and I reminded him that a sports car only depreciates in value, but the value of a child is immeasurable :). He agreed. We will keep everyone updated on our newest venture, but for now, please be in prayer that God brings us a special little person to add to our lives and paves the way for us to get them here.
In other news, they sent me the information on another little girl in India, one who is one year old, and have asked if we would be interested in adopting her. Oh my is she a cutie with huge brown eyes and beautiful long lashes. They say she has spina bifida and in some of her earlier pictures you can see a large lump on her back, however, I have never seen a lump like hers before. It doesn't look like what Madi had on her spine, and it looks more to the side then straight in the back. It's very large, more like a baseball. We are also not sure if it has been fixed yet or not. I have sent her files on to Madi's neurosurgeon, Dr. Moss, and her urologist, Dr. Zuniga, and am (I'm)patiently waiting for their reply. I need to compose a list of questions to ask the orphanage, so I can ask about her back and what has or has not been done with that. We also got information in the mail about what we need to do for our homestudy and the such. They sent me an application that I need to return with a $75 check. I checked our credit card (we pay it off in full every month as we are on the cash budget but use it for bills and gas and the such to get the cash back) and low and behold we had enough for $100 cash back, so there is the money for that! Yeah! We also should be getting a tax refund, so that will give us the $1,800 for the homestudy. Awesome!! David reminded me tonight that adopting a child will cost as much as a sports car, and I reminded him that a sports car only depreciates in value, but the value of a child is immeasurable :). He agreed. We will keep everyone updated on our newest venture, but for now, please be in prayer that God brings us a special little person to add to our lives and paves the way for us to get them here.
Friday, February 11, 2011
A cute little 12 month skirt for free
Every year when the local consignment store I love, Hissyfits, clears out their clothing at the end of the season, I go in and stock up. They only carry cute, brand-name clothing. Most clothing is used so it is much cheaper anyway, but add 75% off on top of that and you get well-made brand-name clothing for almost nothing! I also bring the kids used clothing there so I have lots of store credit I get to use to buy new clothes. Anyhow, we went on Thursday for their big 75% off sale. My mom came with us so that I could actually look around while she entertained the kiddos. She saw this skirt and said Madi really wanted it. When I got it home, I reallied it was only 12 months and too small for her. If anyone would like this cute skirt, I will send it to you for free. It has a little built-in diaper cover. It is tan with little hearts and roses. The first person to comment here that they want it gets it, but please make sure to leave your e-mail address so I can e-mail you for your address. Thanks!
Thursday, February 10, 2011
In Utero Surgery for Spina Bifida
(here is another post I wrote on this topic- http://www.aworthyjourney.com/2011/06/prenatal-surgery-for-spina-bifida.html)
I've gotten quite a few e-mails and texts from people wanting to know if I have heard the news about the in utero surgery for spina bifida, so I figured I would just address it here. To begin with, YES, I have heard, and it is great news! We were actually offered a spot in the study, though we declined it, which I'll explain more about later. Before all of that, though, here's a little bit on the study:
The Management of Myelomeningocele Study (MOMS study) began in 2003 and lasted 7 years. They were going to study 200 babies, but ended up concluding the study at just over 180. The reason the surgery came to be is because doctors noticed that nerve function lessons during a babies time in utero. The idea is that doing a surgery in utero prevents further nerve function loss and, therefore, lessens the effects of spina bifida. It is a controversial idea, however, as spina bifida is not, in itself, life-threatening, and therefore, the surgery is not needed to preserve life. In order to determine if the surgery is effective, mothers who decided to participate were randomized in to two groups; those that would have the prenatal surgery and those that would have the postnatal surgery. If you were chosen for prenatal surgery, the surgery was done by one of the MOMS surgeons in one of their facilities at between the 19th and 25th week of pregnancy. Moms then stayed close to the facility until they were 37 weeks and had their child born via c-section by one of the MOMS doctors. If you were chosen for the postnatal surgery, you were sent home but then were asked to return and were given a c-section at 37 weeks and the postnatal surgery was completed by one of the MOMS surgeons in one of their facilities.
For the prenatal surgery, possible risks to the mother include (found at http://www.spinabifidamoms.com/english/overview.html):
As you can see, the surgery helped to greatly lessen the amount of kiddos that needed shunts (which is HUGE... shunts really stink. Well, ok, I admit that shunts are amazing and life saving, but they also come with their own risks). It also helped with increased mobility and decreased the number of kids borth with a Chiari II malformation. I read that they are unsure if it has helped with bowel and bladder issues and will be studying that further as they continue to follow the children that participated in the study. On the down side, over 80% of the babies were born prematurely, averaging 1 1/2 months premature. Obviously there are many advantages to participating in the surgery, however there are also many risks. On a side note, I have read about a few children that participated in the study and were born with spina bifida, but also cerebral palsy. I noted that this was not addressed in the results. I have always wondered if the cerebral palsy was due to a reduced oxygen level in utero, which is one of the side effects they list (Membrane separation. The fetal surgery may cause the tissues surrounding the baby and amniotic fluid to separate from the uterus causing early delivery or interference with the blood flow to some part of the baby such as an arm or leg). I would be curious to see if they felt the surgery contributed to the cerebral palsy or not.
Now I will tell you a little bit about our dealings with the study and why we made the decisions we that we did concerning the study. We were offered the study and met the qualifications, but of course, we did not know which group we would get randomized in to. We have a great support group and David is blessed with a flexible job, so we would have been able to participate logistically as well. I was about to say "yes" when I decided it would be best to talk to Madi's neurosurgeon and see how he felt about the study. I had read the risks of the surgery and, basically, I wanted to know if the benefits outweighed the risks. It was actually very interesting that her neurosurgeon is Dr. Moss because he was offered a positition to be one of the doctors to do the surgeries for the MOMS trial, but he had turned down the offer due to his beliefs on the study. In a nutshell he told us that he was not seeing enough positive research coming from the study and that he felt the risks did not outweigh the benifits. He said that a child's level of functioning is all a guess until they come, so it is really impossible to say for sure that the surgery made them higher functioning. He told me they had lost a few babies due to them being born so early, and that many others had some very serious complications from being born so early. He said that having a baby born prematurely could possibly lead to many more complications and that those complications were not worth the risk. After talking with him I talked to a few mothers who participated in the study. Some swore by it, saying that they felt very strongly that it helped their child. Others were not so sure it did help or were not happy with some of the complications their child had due to their premature birth. Contemplating all of this and deciding what to do was incredibly hard. One on hand, I wanted to do anything I could to help my daughter. I was not worried about any of the risks to me, because I would risk everything for her. I was, however, worried about the risks to her. I had already denied having an amniocentesis done because of the small chance of it causing me to miscarry (and because I wanted the doctors to operate on her like she would live to be 100, and if she had any chromisome abnormalities, I did not want them to know). I kept going back to the fact that I could help her, but that I could also loose her. I decided that I could not risk loosing her, period, and David felt the same way. We would deal with whatever life brought us, but we wanted her with us, living that life with us. It was a very, very hard decision to make, however, I do not, for one second, regret it. It was the right decision for us.
My thoughts on the surgery are that it is amazing and a step in the right direction. I feel that it is essential to continue the research and believe that they need to now focus on finding ways to lessen the risks so that the surgery can be more of a benefit to children. I am thankful that so many families stepped up to participate in the study, as we would not have this information without them. I am glad to see many families happy with their decisions to persue the surgery and feel that they made the right decision for their children. I also believe that those who decided not to persue the surgery made the right decision for their, as both sets of families were following God's plan for their child, and that is what is important. I am hopeful that the advances in technology we are seeing will change how spina bifida impacts our precious children. But, with all of that said, I am choosing not to ask "what-if". I think Madi is amazing just the way she is because she is just the way God designed her to be. I do not regret the decision that we made for her.
I've gotten quite a few e-mails and texts from people wanting to know if I have heard the news about the in utero surgery for spina bifida, so I figured I would just address it here. To begin with, YES, I have heard, and it is great news! We were actually offered a spot in the study, though we declined it, which I'll explain more about later. Before all of that, though, here's a little bit on the study:
The Management of Myelomeningocele Study (MOMS study) began in 2003 and lasted 7 years. They were going to study 200 babies, but ended up concluding the study at just over 180. The reason the surgery came to be is because doctors noticed that nerve function lessons during a babies time in utero. The idea is that doing a surgery in utero prevents further nerve function loss and, therefore, lessens the effects of spina bifida. It is a controversial idea, however, as spina bifida is not, in itself, life-threatening, and therefore, the surgery is not needed to preserve life. In order to determine if the surgery is effective, mothers who decided to participate were randomized in to two groups; those that would have the prenatal surgery and those that would have the postnatal surgery. If you were chosen for prenatal surgery, the surgery was done by one of the MOMS surgeons in one of their facilities at between the 19th and 25th week of pregnancy. Moms then stayed close to the facility until they were 37 weeks and had their child born via c-section by one of the MOMS doctors. If you were chosen for the postnatal surgery, you were sent home but then were asked to return and were given a c-section at 37 weeks and the postnatal surgery was completed by one of the MOMS surgeons in one of their facilities.
For the prenatal surgery, possible risks to the mother include (found at http://www.spinabifidamoms.com/english/overview.html):
- Wound infection after the fetal surgery.
- Intrauterine (in the uterus) infection. If this occurs the baby will need to be delivered right away.
- Amniotic fluid leak. If it occurs, the mother will probably need to be admitted to the hospital to be treated with bed rest and IV (intravenous) fluids. She may need to stay in the hospital until delivery.
- Loss of ability to have more children.
- Significant bleeding during the fetal surgery.
- Side effects from any medications needed before, during, or after surgery. Side effects depend on the specific medications used.
- Complications from general anesthesia. This risk is no higher than for any other surgery requiring general anesthesia.
- Effect on future pregnancies and deliveries. It is recommended that mothers do not labor during future pregnancies and deliver by C-section instead.
- Psychological stress. There are risks of depression in both groups of women. There is the potential for placing a psychological burden on the family because of the demands of the study, including having to stay away from home and the need to travel to the MOMS Center several times.
- Further damage to the spinal cord and nerves from the prenatal surgery.
- Prematurity. Fetal surgery can result in early delivery. The earlier the baby is born, the higher the chance that they will have problems associated with prematurity.
- Membrane separation. The fetal surgery may cause the tissues surrounding the baby and amniotic fluid to separate from the uterus causing early delivery or interference with the blood flow to some part of the baby such as an arm or leg.
- In the intention-to-treat analysis, the first primary outcome — fetal or neonatal death or the need for a cerebrospinal fluid shunt by 12 months — occurred in 68% of infants in the prenatal surgery group vs 98% in the postnatal surgery group, a relative risk reduction of 30% (relative risk, 0.70; 95% confidence interval [CI], 0.58 - 0.85; P < .001).
- Actual rates of shunt placement at 12 months of age were 40% and 82%, respectively, yielding a relative risk reduction of 52% with prenatal surgery (relative risk, 0.48; 97.7% CI, 0.36 - 0.64; P < .001).
- At 12 months, the proportion of infants with no evidence of hindbrain herniation was higher in the prenatal than the postnatal surgery group (36% vs 4%) and the rate of moderate or severe hindbrain herniation was lower (25% vs 67%).
- At 30 months, prenatal surgery relative to postnatal surgery also resulted in a significant improvement in the composite score for mental development (Bayley Mental Development Index) and motor function (P = .007). Forty-two percent of children in the prenatal surgery group were able to walk independently without orthotics or devices vs 21% of children in the postnatal surgery group (P = .01).
- Dr. Adzick and his colleagues note in their report that although the prenatal surgery group had better outcomes than the postnatal surgery group, "not all infants benefited from the early intervention, and some had a poor neuromotor outcome." Going forward, "we need to refine things in terms of diagnosis and figuring out which fetuses with spina bifida will benefit the most," Dr. Adzick told Medscape Medical News.
- Prenatal surgery was associated with higher rates of maternal and certain fetal complications, including spontaneous membrane rupture (46% vs 8%), oligohydramnios (21% vs 4%), preterm birth (79% vs 15%), and more complications associated with prematurity, such as respiratory distress syndrome, which was seen in one fifth of infants in the prenatal surgery group. One third of women who underwent prenatal surgery had an area of dehiscence or a very thin prenatal uterine surgery scar at the hysterotomy site.
- In their commentary, Dr. Simpson and Dr. Greene emphasize the need for explicit risk-benefit conversations with women contemplating prenatal myelomeningocele repair.
- "For many women, the 20% absolute improvement in ambulation at the age of 3 years and the decreased need for shunting may be perceived as sufficient to justify the increased risk of maternal complications, but it should be recognized that outcomes after prenatal surgery were less than perfect in MOMS.
- Motor function improved but there was no difference in cognitive function alone. http://news.yahoo.com/s/ap/20110209/ap_on_he_me/us_med_fetal_surgery
- Two children died within days of the fetal surgery; two children who had the fix after birth and had shunts died later. http://news.yahoo.com/s/ap/20110209/ap_on_he_me/us_med_fetal_surgery
- Eighty percent of those who had fetal surgery were born premature compared with 15 percent in the after-delivery group. On average, children who had surgery while still in the womb were born 1 1/2 months early and had more breathing problems. http://news.yahoo.com/s/ap/20110209/ap_on_he_me/us_med_fetal_surgery
- For safety reasons, the study did not include obese women, even though they have higher rates of fetuses with spina bifida. http://news.yahoo.com/s/ap/20110209/ap_on_he_me/us_med_fetal_surgery
- The study’s participants will continue to be followed. Several more questions remain to be answered. The children delivered during the MOMS trial, some of whom are as old as 7, will continue to be assessed to see if side effects of myelomeningocele like bladder and bowel control, and intellectual/learning disorders are impacted by fetal surgery. http://news.vanderbilt.edu/2011/02/vanderbilt-pioneered-fetal-surgery-procedure-yields-positive-results/
As you can see, the surgery helped to greatly lessen the amount of kiddos that needed shunts (which is HUGE... shunts really stink. Well, ok, I admit that shunts are amazing and life saving, but they also come with their own risks). It also helped with increased mobility and decreased the number of kids borth with a Chiari II malformation. I read that they are unsure if it has helped with bowel and bladder issues and will be studying that further as they continue to follow the children that participated in the study. On the down side, over 80% of the babies were born prematurely, averaging 1 1/2 months premature. Obviously there are many advantages to participating in the surgery, however there are also many risks. On a side note, I have read about a few children that participated in the study and were born with spina bifida, but also cerebral palsy. I noted that this was not addressed in the results. I have always wondered if the cerebral palsy was due to a reduced oxygen level in utero, which is one of the side effects they list (Membrane separation. The fetal surgery may cause the tissues surrounding the baby and amniotic fluid to separate from the uterus causing early delivery or interference with the blood flow to some part of the baby such as an arm or leg). I would be curious to see if they felt the surgery contributed to the cerebral palsy or not.
Now I will tell you a little bit about our dealings with the study and why we made the decisions we that we did concerning the study. We were offered the study and met the qualifications, but of course, we did not know which group we would get randomized in to. We have a great support group and David is blessed with a flexible job, so we would have been able to participate logistically as well. I was about to say "yes" when I decided it would be best to talk to Madi's neurosurgeon and see how he felt about the study. I had read the risks of the surgery and, basically, I wanted to know if the benefits outweighed the risks. It was actually very interesting that her neurosurgeon is Dr. Moss because he was offered a positition to be one of the doctors to do the surgeries for the MOMS trial, but he had turned down the offer due to his beliefs on the study. In a nutshell he told us that he was not seeing enough positive research coming from the study and that he felt the risks did not outweigh the benifits. He said that a child's level of functioning is all a guess until they come, so it is really impossible to say for sure that the surgery made them higher functioning. He told me they had lost a few babies due to them being born so early, and that many others had some very serious complications from being born so early. He said that having a baby born prematurely could possibly lead to many more complications and that those complications were not worth the risk. After talking with him I talked to a few mothers who participated in the study. Some swore by it, saying that they felt very strongly that it helped their child. Others were not so sure it did help or were not happy with some of the complications their child had due to their premature birth. Contemplating all of this and deciding what to do was incredibly hard. One on hand, I wanted to do anything I could to help my daughter. I was not worried about any of the risks to me, because I would risk everything for her. I was, however, worried about the risks to her. I had already denied having an amniocentesis done because of the small chance of it causing me to miscarry (and because I wanted the doctors to operate on her like she would live to be 100, and if she had any chromisome abnormalities, I did not want them to know). I kept going back to the fact that I could help her, but that I could also loose her. I decided that I could not risk loosing her, period, and David felt the same way. We would deal with whatever life brought us, but we wanted her with us, living that life with us. It was a very, very hard decision to make, however, I do not, for one second, regret it. It was the right decision for us.
My thoughts on the surgery are that it is amazing and a step in the right direction. I feel that it is essential to continue the research and believe that they need to now focus on finding ways to lessen the risks so that the surgery can be more of a benefit to children. I am thankful that so many families stepped up to participate in the study, as we would not have this information without them. I am glad to see many families happy with their decisions to persue the surgery and feel that they made the right decision for their children. I also believe that those who decided not to persue the surgery made the right decision for their, as both sets of families were following God's plan for their child, and that is what is important. I am hopeful that the advances in technology we are seeing will change how spina bifida impacts our precious children. But, with all of that said, I am choosing not to ask "what-if". I think Madi is amazing just the way she is because she is just the way God designed her to be. I do not regret the decision that we made for her.
Wednesday, February 9, 2011
The story of a little girl
(See links at the bottom of the page for adoption updates)
I have a story to tell, one that I think must be told. It is the story of a little girl, though not the one you would think. This is the story of a little girl I have never met, but who has impacted my life so greatly that it will forever be changed. A few weeks back I got an e-mail from someone who found my blog when she was Googling to find information on Spina Bifida. There was a little girl in India in desperate need of a family who had spina bifida. The woman who contacted me was thinking about adopting her and had many questions about what life looks like when you have a child with spina bifida. She had asked if she could call me to discuss her questions. Of course I said yes, but we never got that far. She had thoroughly reviewed this little girl's file and had decided that her family could not handle this little one's medical issues because of the severe medical issues their other child has. I think it is wonderful that they even considered it, and that she and her family took the time to thoroughly research what they would need to do in order to be the family this little girl needs. She was not meant to be part of their family, and that's ok. God has a child in mind for them, and they will be amazing parents to whatever child God brings in their life.
This little girl, however, does need a family, and time is running out. You see, this little girl, just 3 years old, has urinary issues, just like my Madi. However, unlike Madi, she is not able to be given the care she needs to deal with them. Because of this, she keeps getting urinary tract infections (UTIs). Her latest turned in to a kidney infection and hospitalization. This little girl is very sick and shouldn't be. What she is dealing with should just be part of her every day "normal" care. Instead, she is sick, when my little girl is thriving, because she does not have access clean catheters and prophilactic antibiotics (and other suppliments) to deal with her renal reflux. She is sick because the orphanage carrying for her has no way to give her the care she needs, as much as their hearts long to. She is sick. Madi is thriving. It just does not seem fair. And, to top it all off, if she continues down this road, she will die without ever knowing the love of a family. She is also has limited time to find a family before she goes unadoptable internationally, and has less than 30 days left.
So what do you do when you hear there is a child that is very sick, and you can give her the help she needs? What do you do when the things that scare other people about her care are just a part of your normal day-to-day life? We started by asking a lot of questions, yet the answer always seemed to be the same. You try. You do not worry about the future, because no one knows what the future holds. You do not worry about what others will think and if they will call you crazy, because a life is more important that that. You do not question if you can do it, because God would not put this child in your heart and in your life, then walk away from you. You try, because you are not making a difference in the life of a child, you are making THE difference in the life of a child. You try. God will work out the details.
David and I decided to put in a pre-adoption application and just see what happens. Amazingly, it was David's decision. I was talking to him about her and telling him I couldn't get her off of my mind. I told him I was very worried about her. He told me we should put in the application and see if they would even let us have her. Wow, I was taken back. David has never been quick to make a decision, and here he was, telling me to try. My mom was over helping with the kiddos while I got some work done the same day. I told her about this little angel, expecting her to tell me I was crazy. We are too busy. We already have one child with special needs. We have a lot on our plates as it is. Nope. She said none of that. Instead she told me that we have a great support system and that we could make it work, and she is right. I was also expecting to hear that Madi is still very young, which is something we have thought a lot about, but an adoption through India takes two years, meaning she would be four by the time this little girl would even get to come home with us. That put things in a different perspective for us as well.
We have been talking a lot about what life with two kiddos with special needs would look like. I have been busy searching out families that have experience with this to talk to. I have talked to many, and we are going to be talking to some together. This will not be something we just jump right in to without giving it much thought. Honestly, I think about it a lot. I over think it. I think about double the hospital stays and double the doctor's visits. I think about double the therapies and double the cathings. I think about the double liftings and the double adaptive equipment. It seems like a lot, but doubles means something else huge. It means this little girl is alive to experience these things. Worrying about anything short of that just seems so insignificant.
After submitting the pre-adoption application I learned that a few other families have expressed interest in this little girl, which is amazing. The bottom line is this little girl needs a family that can give her the help she needs, whether that family is ours or another. In all honesty, considering their are other families interested in adopting her, we probably will not get her, as we have not yet started the official adoption process. Because adoptions through India take two years after you are cleared, they will most likely pick a family that is already adoption ready, and that is ok, we just had to try. We had to know she would have a family, even if it is not ours. But I will tell you that this little girl has taught me a lot already. She has taught me that God has put this in our hearts and that he is calling us to adopt. She has taught me that we are ready to open our home to another child. She has taught me that we need to find a child we can bless in a way that other famillies are not prepared to. She has taught me so much and shown me so much about myself, and I have never even met her. What an amazing little girl.
Update 1: Ramya found another family: http://www.aworthyjourney.com/2011/02/well-we-have-answer-sort-of.html
I have a story to tell, one that I think must be told. It is the story of a little girl, though not the one you would think. This is the story of a little girl I have never met, but who has impacted my life so greatly that it will forever be changed. A few weeks back I got an e-mail from someone who found my blog when she was Googling to find information on Spina Bifida. There was a little girl in India in desperate need of a family who had spina bifida. The woman who contacted me was thinking about adopting her and had many questions about what life looks like when you have a child with spina bifida. She had asked if she could call me to discuss her questions. Of course I said yes, but we never got that far. She had thoroughly reviewed this little girl's file and had decided that her family could not handle this little one's medical issues because of the severe medical issues their other child has. I think it is wonderful that they even considered it, and that she and her family took the time to thoroughly research what they would need to do in order to be the family this little girl needs. She was not meant to be part of their family, and that's ok. God has a child in mind for them, and they will be amazing parents to whatever child God brings in their life.
This little girl, however, does need a family, and time is running out. You see, this little girl, just 3 years old, has urinary issues, just like my Madi. However, unlike Madi, she is not able to be given the care she needs to deal with them. Because of this, she keeps getting urinary tract infections (UTIs). Her latest turned in to a kidney infection and hospitalization. This little girl is very sick and shouldn't be. What she is dealing with should just be part of her every day "normal" care. Instead, she is sick, when my little girl is thriving, because she does not have access clean catheters and prophilactic antibiotics (and other suppliments) to deal with her renal reflux. She is sick because the orphanage carrying for her has no way to give her the care she needs, as much as their hearts long to. She is sick. Madi is thriving. It just does not seem fair. And, to top it all off, if she continues down this road, she will die without ever knowing the love of a family. She is also has limited time to find a family before she goes unadoptable internationally, and has less than 30 days left.
So what do you do when you hear there is a child that is very sick, and you can give her the help she needs? What do you do when the things that scare other people about her care are just a part of your normal day-to-day life? We started by asking a lot of questions, yet the answer always seemed to be the same. You try. You do not worry about the future, because no one knows what the future holds. You do not worry about what others will think and if they will call you crazy, because a life is more important that that. You do not question if you can do it, because God would not put this child in your heart and in your life, then walk away from you. You try, because you are not making a difference in the life of a child, you are making THE difference in the life of a child. You try. God will work out the details.
David and I decided to put in a pre-adoption application and just see what happens. Amazingly, it was David's decision. I was talking to him about her and telling him I couldn't get her off of my mind. I told him I was very worried about her. He told me we should put in the application and see if they would even let us have her. Wow, I was taken back. David has never been quick to make a decision, and here he was, telling me to try. My mom was over helping with the kiddos while I got some work done the same day. I told her about this little angel, expecting her to tell me I was crazy. We are too busy. We already have one child with special needs. We have a lot on our plates as it is. Nope. She said none of that. Instead she told me that we have a great support system and that we could make it work, and she is right. I was also expecting to hear that Madi is still very young, which is something we have thought a lot about, but an adoption through India takes two years, meaning she would be four by the time this little girl would even get to come home with us. That put things in a different perspective for us as well.
We have been talking a lot about what life with two kiddos with special needs would look like. I have been busy searching out families that have experience with this to talk to. I have talked to many, and we are going to be talking to some together. This will not be something we just jump right in to without giving it much thought. Honestly, I think about it a lot. I over think it. I think about double the hospital stays and double the doctor's visits. I think about double the therapies and double the cathings. I think about the double liftings and the double adaptive equipment. It seems like a lot, but doubles means something else huge. It means this little girl is alive to experience these things. Worrying about anything short of that just seems so insignificant.
After submitting the pre-adoption application I learned that a few other families have expressed interest in this little girl, which is amazing. The bottom line is this little girl needs a family that can give her the help she needs, whether that family is ours or another. In all honesty, considering their are other families interested in adopting her, we probably will not get her, as we have not yet started the official adoption process. Because adoptions through India take two years after you are cleared, they will most likely pick a family that is already adoption ready, and that is ok, we just had to try. We had to know she would have a family, even if it is not ours. But I will tell you that this little girl has taught me a lot already. She has taught me that God has put this in our hearts and that he is calling us to adopt. She has taught me that we are ready to open our home to another child. She has taught me that we need to find a child we can bless in a way that other famillies are not prepared to. She has taught me so much and shown me so much about myself, and I have never even met her. What an amazing little girl.
I do ask of one thing from everyone who made it this far (and thank you for reading my thoughts, it really does mean a lot to me). I would like you to pray for this little girl. Pray that God guards her little body and kidneys from infection. Pray that God keeps her healthy enough to go home to a family that can help her. Pray that God does not allow her kidneys to fail her and that she lives long enough to meet her family. Pray that the orphanage chooses the right family for her, and that the adoption happens quickly (faster than the two years it normally takes). Pray for the other kids out there like her, and for the families that are considering adopting them.
"And anyone who welcomes a little child like this on my behalf is welcoming me."
- Matthew 18:5
Update 1: Ramya found another family: http://www.aworthyjourney.com/2011/02/well-we-have-answer-sort-of.html
Update 2: Ramya is back up for adoption: http://www.aworthyjourney.com/2011/04/enter-curve-ball.html
Update 3: Ramya will be ours: http://www.aworthyjourney.com/2011/06/he-chose-her-for-us.html
Update 4: Homestudies completed: http://www.aworthyjourney.com/2011/05/one-step-closer.html
Update 4: Homestudies completed: http://www.aworthyjourney.com/2011/05/one-step-closer.html
Update 5: Arizona approval completed: http://www.aworthyjourney.com/2011/10/just-way-to-arrive-home-from-vacation.html
Update 6: i-800a approval: http://www.aworthyjourney.com/2012/02/its-here.html
Update 7: i-800 approval: http://www.aworthyjourney.com/2012/03/what-nice-surprise-and-on-perfect-day.html
Waiting, waiting, waiting for our NOC! http://www.aworthyjourney.com/2012/06/whats-up-with-india.html
Update 8: Our NOC is here and we are approved in India and officially matched http://www.aworthyjourney.com/2012/06/hip-hip-hurray-help-us-celebrate-today.html
Update 9: Court is DONE! http://www.aworthyjourney.com/2012/10/im-hyperventilating-right-now.html
Update 10: Court paperwork received, passport application can now start: http://www.aworthyjourney.com/2012/12/one-step-closer.html
"Maternity" Photos: http://www.aworthyjourney.com/2012/12/maternity-photos.html
Our Adoption Story Video: http://www.aworthyjourney.com/2013/01/the-longer-version-of-how-we-found-ramya.html
Update 11: Passport Received!: http://www.aworthyjourney.com/2013/01/come-cry-and-rejoice-with-me.html
Travel Plans: http://www.aworthyjourney.com/2013/02/we-have-plan.html
Meeting Ramya for the first time: http://www.aworthyjourney.com/2013/02/the-moment-i-have-been-waiting.html
Our day at the orphanage: http://www.aworthyjourney.com/2013/02/my-day-meeting-ramya.html
It's official in India: http://www.aworthyjourney.com/2013/02/its-official.html
And we are home: http://www.aworthyjourney.com/2013/02/we-are-home-from-india-and-officially.html
A slideshow of our India adoption trip: http://www.aworthyjourney.com/2013/04/a-slideshow-of-our-india-adoption-trip.html
Ramya's first birthday home: http://www.aworthyjourney.com/2013/03/a-very-special-birthday-party-for-very.html
Ramya's adoption meet and greet: http://www.aworthyjourney.com/2013/04/ramyas-adoption-meet-and-greet.html
Our re-adoption in Arizona is official: http://www.aworthyjourney.com/2013/10/ramyas-adoption-is-officially-official.html
One year home... Happy adoption day! http://www.aworthyjourney.com/2014/02/one-year-home-ramyas-adoption-day.html
Two years home! http://www.aworthyjourney.com/2015/02/our-two-year-adopton-celebration.html
Update 6: i-800a approval: http://www.aworthyjourney.com/2012/02/its-here.html
Update 7: i-800 approval: http://www.aworthyjourney.com/2012/03/what-nice-surprise-and-on-perfect-day.html
Waiting, waiting, waiting for our NOC! http://www.aworthyjourney.com/2012/06/whats-up-with-india.html
Update 8: Our NOC is here and we are approved in India and officially matched http://www.aworthyjourney.com/2012/06/hip-hip-hurray-help-us-celebrate-today.html
Update 9: Court is DONE! http://www.aworthyjourney.com/2012/10/im-hyperventilating-right-now.html
Update 10: Court paperwork received, passport application can now start: http://www.aworthyjourney.com/2012/12/one-step-closer.html
"Maternity" Photos: http://www.aworthyjourney.com/2012/12/maternity-photos.html
Our Adoption Story Video: http://www.aworthyjourney.com/2013/01/the-longer-version-of-how-we-found-ramya.html
Update 11: Passport Received!: http://www.aworthyjourney.com/2013/01/come-cry-and-rejoice-with-me.html
Travel Plans: http://www.aworthyjourney.com/2013/02/we-have-plan.html
Meeting Ramya for the first time: http://www.aworthyjourney.com/2013/02/the-moment-i-have-been-waiting.html
Our day at the orphanage: http://www.aworthyjourney.com/2013/02/my-day-meeting-ramya.html
It's official in India: http://www.aworthyjourney.com/2013/02/its-official.html
And we are home: http://www.aworthyjourney.com/2013/02/we-are-home-from-india-and-officially.html
A slideshow of our India adoption trip: http://www.aworthyjourney.com/2013/04/a-slideshow-of-our-india-adoption-trip.html
Ramya's first birthday home: http://www.aworthyjourney.com/2013/03/a-very-special-birthday-party-for-very.html
Ramya's adoption meet and greet: http://www.aworthyjourney.com/2013/04/ramyas-adoption-meet-and-greet.html
Our re-adoption in Arizona is official: http://www.aworthyjourney.com/2013/10/ramyas-adoption-is-officially-official.html
One year home... Happy adoption day! http://www.aworthyjourney.com/2014/02/one-year-home-ramyas-adoption-day.html
Two years home! http://www.aworthyjourney.com/2015/02/our-two-year-adopton-celebration.html
Saturday, February 5, 2011
A wonderful reminder
I read this blog post at Broken Body/ Whole Spirit and thought it was such an amazing post, I just had to share (with permission from the author, of course). The author of the blog, Misty, has an amazing story of life to tell that you can read here . Her words were an awesome reminder to me today and I wanted to share them with everyone that follows our blog, but especially other moms who have the blessing of having a child with spina bifida in their life. Enjoy!
Milestones
Posted on January 26, 2011 by Misty
There seems to be a recurring theme in some of the blogs I’ve been reading lately. I’ve been reading about late milestones, and worries about when or if they’ll ever be met. I wish I could reach everyone and tell you how much these things just won’t matter to your children. I have no idea when I learned to hold my head up, or roll over, or sit up by myself, or crawl (in fact, I’m not sure I ever crawled at all). I don’t know when I said my first word, or what it was. I don’t know when I learned my numbers, or when I learned to read. Thing is, I can do it now, and it doesn’t really matter to me that I was late. I’m sure I was late for most of it, but I found my way. I’m sure I worked harder than my spinally typical older brother did (thanks for the term, n3rdchick!), but I don’t remember much of it. For me, its just some stuff my parents say happened when I was little. I wasn’t bothered by being late, or working harder. I just wanted my toys, and they were across the room, so I figured out how to get them….without my legs.
My mom will tell you that I’m stubborn. She’s right. I think all the extra hard work made me that way. I’ve always been the girl that “can do it myself” even if it looks impossible, and its not impossible until I hurt myself or discover I’m too short! Seems those top cabinets don’t get any closer no matter how far I stretch my arm. Sigh…
What I’d like to say here, is that ten years from now, your kids won’t care that it took them FOREVER to roll over, or crawl on all fours, or say their first word. They’ll care that you stuck with them while they tried, and because you did the extra work with them, they can do it now. I know you guys work SO hard for results, and the progress is SO slow, but you’re doing a great thing for your kids. Keep with it, but don’t watch the calendar so much. They’ll get there when they get there, and if you’re busy watching the calendar, you just might miss it!
Milestones
Posted on January 26, 2011 by Misty
There seems to be a recurring theme in some of the blogs I’ve been reading lately. I’ve been reading about late milestones, and worries about when or if they’ll ever be met. I wish I could reach everyone and tell you how much these things just won’t matter to your children. I have no idea when I learned to hold my head up, or roll over, or sit up by myself, or crawl (in fact, I’m not sure I ever crawled at all). I don’t know when I said my first word, or what it was. I don’t know when I learned my numbers, or when I learned to read. Thing is, I can do it now, and it doesn’t really matter to me that I was late. I’m sure I was late for most of it, but I found my way. I’m sure I worked harder than my spinally typical older brother did (thanks for the term, n3rdchick!), but I don’t remember much of it. For me, its just some stuff my parents say happened when I was little. I wasn’t bothered by being late, or working harder. I just wanted my toys, and they were across the room, so I figured out how to get them….without my legs.
My mom will tell you that I’m stubborn. She’s right. I think all the extra hard work made me that way. I’ve always been the girl that “can do it myself” even if it looks impossible, and its not impossible until I hurt myself or discover I’m too short! Seems those top cabinets don’t get any closer no matter how far I stretch my arm. Sigh…
What I’d like to say here, is that ten years from now, your kids won’t care that it took them FOREVER to roll over, or crawl on all fours, or say their first word. They’ll care that you stuck with them while they tried, and because you did the extra work with them, they can do it now. I know you guys work SO hard for results, and the progress is SO slow, but you’re doing a great thing for your kids. Keep with it, but don’t watch the calendar so much. They’ll get there when they get there, and if you’re busy watching the calendar, you just might miss it!
Friday, February 4, 2011
Such an amazing blessing!
I just got the tax information in the mail from Madi's Amazon Associate's Account. Last year, our commission from Amazon purchases was over $800!!! Can you believe it?!?!?!?! It has been such a HUGE blessing to have this money for Madi. With it we were able to purchase forearm crutches, her Rifton Dynamic Stander (mobile stander), her little training pants so she can have "big girl undees" and her First Toddle system, which got her WALKING! I wanted to say a big "thank you" to everyone who purchases through her link and/or shares it with your friends and family. I know it seems like no big deal, but it really amounts to something huge! We are able to give Madi those "extra" things that add so much to her quality of life and self-esteem because of this money. THANK YOU for blessing our family!
Madi showing off her stander....
Proudly displaying her "big girl undees"... Don't ask me how her legs can do that! At least she is getting good at fixing them and not 'w-sitting'!
Showing off her first toddle system
We modified a little purse from the consignment store for Madi's stander. Now she has a place for all of her treasures and her baby dolls!
Madi loved meeting Corbin of Zebra Sports at a friend's party. She thought his chair was pretty amazing!
P.S. Madi's stander is a Rifton Dynamic Stander. For more information, go to http://www.rifton.com/products/standing/ :)
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!
