tag:blogger.com,1999:blog-48593145183674236052024-03-13T15:12:35.130-05:00Our Extraordinary Life!!!This is the story of our family. The ups and downs that go along with having twins and a child with special needs. It can be really crazy at times, but it is always GOOD!!!Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-4859314518367423605.post-49246716370632673762011-07-30T18:56:00.003-05:002011-07-31T11:29:55.203-05:0023%It has been a while since I posted...and for us that usually means no news is good news!!! We have all had a really good and busy summer. Everyone has been healthy, thank goodness!!!<br />
<br />
This year was the second summer that the girls attended a day camp for deaf children, their siblings, and children of deaf adults. The camp is 8 weeks long and is at a local deaf church. I am still amazed at how much my girls grow during their summers there. Both of them are really starting to sign well- Amelia is using so much more language. Hannah is also doing an amazing job. Last night was Parent Night. The kids put on a sweet show, and it was great!!!<br />
<br />
The older kids at camp make a movie every year. This year it was about a deaf boy growing up alone in a hearing world. What an impact it had on me!!! It showed his perspective on how things were at school, home, sports, and socially. It is very isolating and lonely for many of these children. They can't communicate with anyone!!!!<br />
<br />
It absolutely breaks my heart to find out that only 23% of children that sign, have families that also learn to sign!!!! I am determined that THAT WILL NOT BE US!!!! We WILL be the 23% that learns to communicate. We have been taking sign language classes for about 3 years, and it is hard. It is hard to remember, it is not always convenient to have class, and it is hard to get into the habit of signing all the time. But, now I know better....I know that Amelia has been excluded from family conversations....I know that she is alone in a hearing world. But, now that I know better.... at least she will not be alone in her hearing home!!!!Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.com0tag:blogger.com,1999:blog-4859314518367423605.post-56703135996825561612011-05-18T15:13:00.000-05:002011-05-18T15:13:46.284-05:00On Hold!!!So, here we are at the hospital again. We had two days at home before we came back. Amelia continued to have fever after we came home and her blood count was low, so she received a blood transfusion last night. We have been in the ER for more than 24 hours waiting on a room. We still do not know what the plan is going to be for Amelia or what is exactly going on with her. Lots of tests have been run, but we still don't have any answers yet. So, here we sit and wait....and wait... and wait some more. <br />
<br />
There is so much about having a sick child that is challenging- the anxiety over what is going on with your child, having to put so much trust in other people - often strangers to make sure that your child gets well, the sleep deprivation, the changes in your family dynamics, the waiting, etc...<br />
<br />
But, one of the things that is so hard when you spend day after day in the hospital is the fact that you feel like your life has been placed on hold. Life continues to happen everywhere, and I just feel stuck. The days are long, and the sleepless nights are even longer. But, I just have to do the best I can to keep things going and focus on taking care of Amelia and getting her well. She does make it easy with her sweet and joyful spirit. Even when she feels terrible, she can almost always manage to give at least a little smile. Over the past 27 days, we have been in the hospital for 17 of those days and I am not even sure how long they anticipate her having to be here this time around. <br />
<br />
I feel horrible for not being able to be there for Hannah and I feel like I have missed so much with her. This is her last week of 1st grade and I am not able to be there with her. Hannah is amazingly grounded and and self confident, so I am sure that she is fine. But, it hurts this momma's heart to be torn between my two girls right now. I want to be there for both of them, together!!!<br />
<br />
I am so ready for Amelia to be well and back to her silly old self!!! And selfishly I am ready to get life back to our version of "normal"!!!Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.com3tag:blogger.com,1999:blog-4859314518367423605.post-87274935704959430002011-05-11T08:25:00.001-05:002011-05-11T08:28:01.438-05:00Another Bump in the Road...So, I thought that I would do a much better job at updating my blog. But, it seems like before I turned around 2 months had passed. We have just had a really crazy couple of months. I started a new job and continued to work my regular schedule at the hospital. I have now cut back at the hospital, so my schedule should start easing up...at least a little bit. Spring is also just a really busy time of year for us- end of the school year combined with the girls birthday, getting ready for summer camp, trying to figure out a vacation, etc... I am sure most families feel the same way we do this time of year.<br />
<br />
So, to add on to our already crazy spring- Amelia has been hospitalized twice. The first time was over Easter weekend because she had a fever of 103 and pus draining from her VP shunt. After 48 hours of IV antibiotics, we were sent home with a topical ointment and oral antibiotics and to follow up with her neurosurgeon in 1 week. Throughout the next week she did well- no fever, went back to school, etc... At our follow up with the neurosurgeon he determined that her shunt could not be saved. She was admitted 2 days later, on Wednesday, for surgery to take her shunt out and place n external shunt and the plan was to put a new shunt in on Friday- we would be home on Saturday and have 2 weeks of IV antibiotics at home.<br />
<br />
Well, in typical Amelia fashion, things did not go as planned. After her surgery on Wednesday the doctors told us that her spinal fluid from the week before had late growth of bacteria. So our plan significantly changed. Her shunt would now have to be externalized for 7 days before they felt it would be safe to put a new shunt in. So, here we sit!!! She is scheduled to have surgery tomorrow to place the new shunt and then we should be able to go home on Friday and continue with another week of IV antibiotics at home. <br />
<br />
This has been our longest continuous hospitalization since she came home from the NICU. It has been a really long week (it will be 10 days by the time we go home). I am so ready to go home...I miss Steven and Hannah, my bed, uninterrupted sleep, having space, my house, my own routine, Zumba, etc... For a person that is a homebody, 10 days is way too long to be away- regardless of where you are, much less stuck in a hospital room!!! <br />
<br />
I am not one that usually likes to rush the days away, but right now I just want Friday to hurry up and get here!!!Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.com2tag:blogger.com,1999:blog-4859314518367423605.post-75134870561121745972011-03-01T11:49:00.000-06:002011-03-01T11:49:42.678-06:00The Total Package!!!It's not very often that Hannah gets a post all about her, but yesterday was one of those days that I was so proud. I volunteer in her class as a "reading mom" every Monday. I do this for her class only. Amelia gets so much extra time and attention for appointments and requires extra time at home just for her daily care and homework, that this is something special that I can do just for Hannah. Anyway, I enjoy the time with Hannah and her friends (plus, one of the perks is that the teacher gives little insights into how Hannah is doing).<br />
<br />
I will just start into this with a little description of Hannah. She is healthy, bright, spunky, and STRONG WILLED. She also has a very sweet and sensitive side at times- other times she shows no mercy. She loves to talk and always likes to have "the last word." She can be really hard to parent (in fact, much harder to parent than Amelia). It is not that infrequent that Steven and I will just look at each other and wonder where we went wrong with Hannah (yes, she can be THAT difficult). So, when moments like yesterday come along, it helps us to feel like we are doing something right.<br />
<br />
So, yesterday Hannah's teacher told me that she thinks that Hannah is one of the smartest kids in the class. She is an excellent reader, has the maturity to understand complex concepts, and has good social skills. She said that Hannah is "the total package." WOW!!! <br />
<br />
That definitely makes us so proud of Hannah. To know that even through all of the difficult times at home, that she is able to shine at school. We just hope and pray that she continues to do well and that we are able to parent her in a way that will continue to build her into an amazing girl. Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.com1tag:blogger.com,1999:blog-4859314518367423605.post-11012384131452263802011-02-24T10:19:00.000-06:002011-02-24T10:19:19.585-06:00This Rarely Happens!!!!So, I will take you all back about six months to share another one of our crazy stories. Yes, weird things just seem to happen to us. So, every 6 months Amelia has routine check-ups at Spina Bifida clinic. I just can't express how frustrating clinic days are!!! They typically consist of getting a kidney ultrasound, getting x-rays of her spine, seeing the urologist, orthopedic surgeon, neurosurgeon (once a year), clinic coordinator, and sometimes we toss in a physical therapist, occupational therapist, nutritionist, and a therapy dog. Plus, getting vital signs, height, weight, etc... Then you add in all of the WAITING... It is a LONG, tiring, frustrating day. Most of the time I leave with more questions than I had to begin with.<br />
<br />
Anyway, six months ago we went in for our routine check. Everything was going well-got the x-rays, got the ultrasound, got to see the urologist early, and then we headed up 2 floors to clinic...and we got there a few minutes later than I had hoped (because we were seeing the urologist early). I knew this had the potential for a long wait, and I was right. We waited in the waiting room for at least 2 hours (minus the 20 minutes we took to go grab lunch during our wait). During our wait, I saw the orthopedic surgeon leaving clinic- that is never a good sign!!! <br />
<br />
Finally we get called back to a room for more waiting. At this point we are only waiting to see the orthopedic surgeon. Eventually an orthopedic resident comes in the room and tells me that her regular doctor had to leave, so she would talk to me about Amelia. In my mind I am thinking "seriously, you have never seen my child and think that you are going to be able to offer me some insight on the progression of the curve of her kyphosis, potential surgery on the curve, and what to do about the skin breakdown on her back." So, I play nice and let her do her thing, and then as she is about to leave she says, "by the way, the radiologist called and said that there appears to be a problem with her VA shunt. I think the neurosurgeons have left for the day, so they will get in touch with you tomorrow." At that point my heart sank!!! We have been down this shunt "problem" road before (8 times to be exact) and know that it usually means surgery or hospitalization.<br />
<br />
So, for about the next 20 hours I am a basket case worrying about what is going on. Her neurosurgeon finally calls me, and tells me something that I had never expected to hear. The tip of the tubing of her VA shunt has broken off just below her clavicle and appears to be in her heart (excuse me, did he just say there is tubing floating around in my child's heart). He was not exactly sure of how we would proceed, but was going to make some phone calls and get back in touch with me. In the mean time we went to parent/teacher conferences (and could not pay one bit of attention). About 4 hours later I got a call from one of the pediatric cardiologists. He told me that we would need to go ahead and get that tubing out, which he could do with a cardiac cathterization. He was available to do it in 2 days. WHAT!!!! <br />
<br />
So, 2 days later Amelia breezed through the cardiac cath. What was so weird to us, was that the "tip" of tubing was at least 3 inches long. Also, to sign a consent to have a foreign body removed from your child's heart just sounds so wrong.<br />
<br />
The day after the cardiac cath, Amelia's neurosurgeon called to check on her. At that point in time we decided that it would be in Amelia's best interest to just wait and see if her shunt was going to fail or not. Despite the tubing being broken, it could still drain the extra fluid from her brain. Well, we were not so lucky- about 4 weeks later she started to show some subtle symptoms for shunt failure. We went in for several tests, which confirmed my concerns. So, in November she had her 9th shunt surgery. She had the tip of the shunt placed back into her abdomen (it is a VP shunt again). She did have to have a laproscopy with the shunt revision to find a good spot for the shunt to go, just because she has had so many abdominal surgeries and so much scar tissue. That was a tougher surgery for her. She had a lot of discomfort and was just wiped out for a few weeks.<br />
<br />
Six weeks later we went for our follow up with her neurosurgeon. He was pleased with her progress and said to just see him again in a year as long as everything is going well. But, I could not leave without knowing how many time he had seen a VA shunt break like that. Keep in mind, that he is very experienced, been practicing for 25-30 years. His response was, "It can happen, but I have never seen it before." I tell him, "of course it's going to happen to us then." His response was, "some people get all of the luck."<br />
<br />
So, needless to say Fall was a bit stressful for us. But, I am happy to say that Amelia is doing great right now. We do have spina bifida clinic in a few weeks, and I am hoping that it is boring and uneventful. Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.com0tag:blogger.com,1999:blog-4859314518367423605.post-18307233769755381642011-02-21T20:54:00.002-06:002011-02-21T21:06:08.168-06:00All Grown Up (at least for today)Well, today was just one of those days when you all of the sudden realize that your babies are growing up- and too fast at that. The girls were out of school today, so we spent most of the day just hanging around the house. This afternoon, Amelia had PT first and then speech therapy. I have always gone into Amelia's sessions with her for PT, and usually go in with her for speech. Today marks the first day that Amelia "kicked me out" of both!!! <br />
<br />
I was talking to another mom in the waiting room when Amelia's PT came out to get her, so she took Amelia on back. I walked around and found the room they were in, and Amelia was doing great work. Then, Amelia gave me "the look." You know, the one that basically says "what in the world are you doing here, because I can handle this." So, I asked Amelia if she wanted me to stay or go. Of course, she told me to go!!! She gave me a hug and kiss, and away I went to the waiting room. I know she did well, but it did worry me that her PT does not know much sign language. But they managed just fine.<br />
<br />
Fast forward about 30 minutes to speech, and it was the exact same story- just a different time, place, and therapist. So, twice in one day she decided that she didn't need me with her. Don't get me wrong, I am so proud of how independent and confident she is becoming. But, it does hurt this mama's heart just a little- knowing that they are growing up so fast!!!Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.com0tag:blogger.com,1999:blog-4859314518367423605.post-34220778795769346862011-02-16T12:07:00.000-06:002011-02-16T12:07:00.239-06:00"She's not REALLY deaf"So, I had a conversation with someone about Amelia. During this conversation, I mention that Amelia is deaf, but this person told me "well, she's not really deaf...she has cochlear implants." So, I thought I would share how I feel about Amelia's deafness and what it means to me.<br />
<br />
First of all, she IS really deaf!!! There are many levels of hearing loss- mild, moderate, severe, and profound. My girl is profoundly deaf. Basically what this means is that she might be able to hear a chainsaw at close range without any amplification (I personally doubt it). When her cochlear implants are off, she basically hears nothing- I can scream her name at the top of my lungs, but she will not turn her head. Now if I add stomping or jumping, waving my arms, turning the lights off and on (you get the picture).. then she will look in my direction. <br />
<br />
Yes, she does have bilateral cochlear implants (CI), but that did not take her deafness away by any means. She received her first implant at 21 months and the second one 6 months ago, at 7 years old. You see, we were told in the beginning (before her first CI) to not expect much from Amelia's CI- that she might get environmental sounds, but it was very unlikely that she would hear speech sounds because of her abnormal ear anatomy. I am happy to report that she is getting so much more. She detects speech sounds at almost normal hearing levels (20-25 dB). Normal hearing is 20 dB. But, her speech discrimination is only 30-50%. Basically what this means is that she can hear that someone is talking, but can't understand what they are saying most of the time. So, because of that she has not developed good speech. She has some spoken words, but not enough. We tried an oral deaf education program for 3 years, and with such little progress we decided that adding sign language would be our best option. She was 4 years old at that point- with minimal language (maybe 100 words that were unintelligible). We currently do total communication, which basically means that we will communicate with her anyway that we can-spoken, sign, pictures, etc...<br />
<br />
So, maybe you wonder what it is like or how it feels to have a deaf child. Well, when we first found out she was deaf, I was devastated. Selfishly, I remember thinking that she would never hear my voice or how beautiful her name is. I also remember feeling guilty for being sad that she was deaf. I told myself that I should just be grateful that she is alive (I really wish that I would have allowed myself to really grieve her hearing loss at that time). We had lots of support for Amelia, but there was no emotional support for us. When she was a baby, you never really knew that she was deaf, but as the girls got older the reality of it set in (especially since Hannah was an early talker).<br />
<br />
I have certainly come a long way, but I would lie if I said that it never made me sad that she is deaf. I think that is just part of the daily grind that goes with having a special needs child. Dealing with all of the issues that go along with her hearing loss is harder than anything else that we do-basically because it touches every part of our day. You know that communication is important, but imagine not being able to communicate with your child. It horrifies me. What makes it worse is that about 80% of parents with deaf children that sign, never learn sign language. I REFUSE to be one of those statistics!!! We are studying American Sign Language (ASL), but it is so hard to learn. It is definitely not English. The days get hard...Amelia screams a lot, homework can be a bear, we all get frustrated when she wants something that she can't figure out how to tell us, etc... You get the idea.<br />
<br />
On the other side, there is so much about Amelia that makes her who she is because she is deaf. She is so animated and expressive and has personality plus!!! She is so funny. She loves to sing (of course the rest of us have no clue what she is singing). She is amazingly smart. She is so visual and picks up on little details that the rest of us may miss. We have been told that "Amelia is deaf with a capital 'D'", "she is a true deaf", and "that her deafness is just in her." And all of that makes her the little girl that I LOVE!!!!<br />
<br />
Yes, many people that have CIs have perfect spoken language and you would never know that they were deaf, but that is not my child. There is no technology that can take her deafness away from her, and I am grateful for that. My child is <strong>DEAF</strong> and I love her for who she is and am so proud to be her mom!!!!<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzTOMLDAo2l6ju7cN-C4-1G6NU-mjCTiIIXp_YoUaBF_ejGa9M3D7mtwFjTR6o8Bq7kZvO_iiM6j7kg3Q3tVg' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">Amelia singing/signing "Jesus Loves Me".</div>Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.com0tag:blogger.com,1999:blog-4859314518367423605.post-687749496068680962011-02-08T09:59:00.000-06:002011-02-08T09:59:33.512-06:00This "NEVER" Happens!!!! (#1)Well, if it never happens, then why does it seem to happen to us!!!! <br />
<br />
As Amelia is getting bigger, it is just getting harder to help her with getting around. Yes, I still carry her a lot- but she is heavy!!! Despite only being about 35 pounds, the limited way that she can support herself make her really heavy. I am trying to encourage her to crawl around the house more and also use her wheelchair more at home. One of the obstacles with the chair is stairs, of course. Well, when we come across stairs without a ramp available, we turn her around and kind of "bump" her up or down the stairs. This actually works pretty well, but the chair with her in it is about 77 pounds (not to mention we almost always have a loaded backpack on the chair). When there are more than a few steps, I am always a little nervous about falling or dropping her. Up until Sunday night, this had never happened.<br />
<br />
So, Sunday night we went to our neighbor's house to watch the Superbowl and eat lots of food. We had a blast, as usual. On a side note, they have a crazy dog that loves to play with all the kids. As he was chasing the girls around, he grabbed Hannah's dress and ripped the skirt off in the back (we were all laughing hysterically). After the dress incident, the girls were really wound up so we knew it was time to head home. We head out their front door and I have Amelia in her wheelchair and a small bag on my shoulder. They have maybe 6 steps to go down from their front porch. Steven was already on the sidewalk with Hannah and our crock-pot full of chili. As we start going down, everything is fine, but then with about 2 steps to go me and the chair (with Amelia in it) start to fall. The chair turned to it's right side as it fell down the two steps. I landed on my right knee-it got bruised and scraped. It was like it all happened in slow motion. Steven ran over and grabbed the chair up as fast as he could. Amelia was absolutely terrified!!!! Amazingly, she did not even have one scratch or bruise. She did cry for 30 minutes nonstop afterwards. As we all start to look more closely at the wheelchair, we realize that one of the bolts that holds the wheel assembly in place was broken into 2 pieces. So, her wheelchair was unusable at that point.<br />
<br />
Yesterday, we took the chair to get it repaired and the vendor told me that he had NEVER seen a bolt break like that (of course not). After looking at the chair, he noticed that the top bolt of that wheel assembly was loose, which probably caused the lower bolt to break with the pressure from going down the stairs. So, he thinks the bolt broke, which affected the balance of the chair, which then caused us to fall!!! <br />
<br />
I have not been happy with this chair- ever, so I really can't wait until her new chair comes. We are in the process of waiting on insurance approval for her new chair (she is getting a Zippie Zone). The new chair will probably only weigh about 20 pounds (versus her current chair at 42 pounds). So now, after the bolt breaking fall- the new chair can't get here fast enough!!!<br />
<br />
Since we seem to have had a lot of things that "never happen", happen to us lately I will share a few of those stories over the next few posts. Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.com0tag:blogger.com,1999:blog-4859314518367423605.post-36566280990026685942011-02-02T11:01:00.001-06:002011-02-02T13:01:37.191-06:00WOW...2 YEARS!!!!Wow!!! I knew it had been a long time since I had posted, but 2 YEARS!!!! Anyway, I am going to try to post more frequently and keep things going this time. I will try give a short and sweet version of the past 2 years. The girls started and finished kindergarten and are now in first grade. They LOVE school- Hannah loves to learn and is a social bug. Amelia- well she likes to learn sometimes, but would prefer just playing with her friends. We have been to Disneyworld, New York City, and the beach. Amelia had 4 procedures/surgeries (well 5 if you count what we refer to as the pseudosurgery-that full story will be for another post). She had a kidney biopsy, cochlear implant (second one), cardiac cathterization, and shunt revision. The four of us are becoming much more comfortable with using American Sign Language. The girls got their ears pierced. Hannah has lost 6 teeth and Amelia has lost 3. Amelia got a mobile stander and an Amtryke bicycle. We got a new dog, Josh, and 4 months later we lost our old dog, Jessica. We are still very busy, and pretty overwhelmed most days. As always though...God is good and we are very blessed!!! <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwWeIHxTJiS779Kt6o4evKdNq1dkl-JdCrB1Jhcq5thHf_VKmyFPHPwqROX4LqtR3LBK0VmqHXxNzhsVBdVub9bmsyWqDxT0uS2bkqIIES_rNXmHHVprntRUskF0025TbbbIwnI-ipXxo/s1600/009.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="220" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwWeIHxTJiS779Kt6o4evKdNq1dkl-JdCrB1Jhcq5thHf_VKmyFPHPwqROX4LqtR3LBK0VmqHXxNzhsVBdVub9bmsyWqDxT0uS2bkqIIES_rNXmHHVprntRUskF0025TbbbIwnI-ipXxo/s320/009.JPG" width="320" /></a></div>Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.com0tag:blogger.com,1999:blog-4859314518367423605.post-17509973200469025432009-02-25T17:34:00.007-06:002009-02-26T19:21:14.243-06:00Amelia moves about!!!Amelia got her first wheelchair when she was about 20 months old, right before she and Hannah started preschool at the Hearing School at Vanderbilt (Hannah was a peer model in the class). It was a pink Quickie Kidz that is designed specifically for toddlers to use. She was able to push herself in it the second day that we had it. Wanting to push herself was another story. That took a while (especially since Amelia is really stubborn).<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge9IUZQl7uf4COCqdicCRnOQSOzc69FH_Hvdi4YyB-TwFP_FnlHgUPSME5eGbpdED6EglE8ohRaNzEQn3cYm_Bd39F9y6m4elVKKO0J3YmvIItv5bKDVNdYX5kS6n4qNOl-3ioAYATW_8/s1600-h/DSCN3098.JPG"><img id="BLOGGER_PHOTO_ID_5306886061380060802" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge9IUZQl7uf4COCqdicCRnOQSOzc69FH_Hvdi4YyB-TwFP_FnlHgUPSME5eGbpdED6EglE8ohRaNzEQn3cYm_Bd39F9y6m4elVKKO0J3YmvIItv5bKDVNdYX5kS6n4qNOl-3ioAYATW_8/s320/DSCN3098.JPG" border="0" /></a> Amelia got her second wheelchair when she was 4 (about 3 years after the first one). Insurance will allow a child to get a new wheelchair about every 3 years, so once you get it- you are stuck for a while. She chose the color this time-purple. She loves being in her chair and is really starting to gain lots of skills in it. She is working really hard on climbing in and out (once again she is able to do it, but we struggle with her wanting to do it). She and Hannah love chasing each other around the house, she pushes herself when we are out and about, she has even started to test her skills on ramps- which scares me a little bit. So far she has only flipped over in the chair one time- that was going up a ramp during PT and we did not have her tip guards out. That was a little scary for all of us.<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNm5sTEVnlmFkqonZPS-S6FOQIq4w4Z-N-qttiFVbUd1CWWGcSqhWhQr9RJaWX9qtO9M_c_TkocT1qWB-dFCyP4vIR9afrgf1nKPSAGlsuJoTKgwRf3tDUCPeXaPB-BIUDo8ZULBQmKF0/s1600-h/DSC02398.JPG"><img id="BLOGGER_PHOTO_ID_5306885899175572322" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNm5sTEVnlmFkqonZPS-S6FOQIq4w4Z-N-qttiFVbUd1CWWGcSqhWhQr9RJaWX9qtO9M_c_TkocT1qWB-dFCyP4vIR9afrgf1nKPSAGlsuJoTKgwRf3tDUCPeXaPB-BIUDo8ZULBQmKF0/s320/DSC02398.JPG" border="0" /></a>Amelia also got a stander when she got her first wheelchair. It allows her to be upright and bear weight through her legs, which is extremely important for all body systems. She doesn't mind the stander, but she does get bored easily (especially when she is ready to be on the go). We are thinking about getting her a new stander that has wheels on it similar to a wheelchair, so she can get around in it.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju9YxosSjSBgoXJGQYmZ4RGLi8mGkJ9MNKmezqEp2WqhAqAts8FtXtpw6lwZBxLBSFXfhs29andJtVd1sQEuhNgl5V5lf-VfNSA5UgdYtCP_05h1ROLZmiLuaCConsWN2s21O7euibkMQ/s1600-h/DSCN2844.JPG"><img id="BLOGGER_PHOTO_ID_5306885563291019106" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju9YxosSjSBgoXJGQYmZ4RGLi8mGkJ9MNKmezqEp2WqhAqAts8FtXtpw6lwZBxLBSFXfhs29andJtVd1sQEuhNgl5V5lf-VfNSA5UgdYtCP_05h1ROLZmiLuaCConsWN2s21O7euibkMQ/s320/DSCN2844.JPG" border="0" /></a> When Amelia was almost 3, she was fitted for RGOs, which are walking braces. They completely support her lower body and trunk. She has worked very hard with these braces, but has not been very successful. She is almost at a point where she does not really enjoy them anymore. Each step requires a lot of energy from her and she is so much faster in her wheelchair anyway. Once she outgrows these, we will have to decide if we want to put more money into the RGOs or use those resources for other equipment and services. </div><div></div><div></div><div>Despite Amelia's paralysis, she is very active. She tries to do just about anything and is actually more of a daredevil than Hannah is. Amelia usually army crawls or rolls around the house. She can get herself into a sitting position, but she is till not able to sit unsupported for more than a few seconds- but she is working really hard on that one. It is so awesome to be able to see every small stride that she is able to make, and it makes us appreciate the little things so much more. We are so grateful to have been blessed with these two girls.<br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2zYIn1ruBZsVcweiARW2XcdSVXPjTJGrVpPjMdntMQdyigeRARYp9MvnDE-qpWK-zWqr391t_ZLJOhPf1qh9N3Cwm99psZ_JRMNUohJZCGrDVSorEWIBJ4UHrQthjh-84VEGVHHc9vxM/s1600-h/P6080043.JPG"><img id="BLOGGER_PHOTO_ID_5306885393293451618" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2zYIn1ruBZsVcweiARW2XcdSVXPjTJGrVpPjMdntMQdyigeRARYp9MvnDE-qpWK-zWqr391t_ZLJOhPf1qh9N3Cwm99psZ_JRMNUohJZCGrDVSorEWIBJ4UHrQthjh-84VEGVHHc9vxM/s320/P6080043.JPG" border="0" /></a></div></div></div>Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.com2tag:blogger.com,1999:blog-4859314518367423605.post-55938300402730802032008-11-17T09:47:00.007-06:002008-11-17T14:32:14.357-06:00Reflux and Feeding Tubes!!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbYT2XMqk2nqfr1S-tyMzLu-ImrS9TDzhZtmzO5Bdkvd125iLd4urFzi8oe8dSUdvBgu9yS2UX1y9YEpYfZE_GhhXHH3g4rEk-W6WO0Zs95cVjzavVwQOH5T4APuUOKa6YiEFe-Xrrl7o/s1600-h/DSCN2457.JPG"><img id="BLOGGER_PHOTO_ID_5269725216609483970" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbYT2XMqk2nqfr1S-tyMzLu-ImrS9TDzhZtmzO5Bdkvd125iLd4urFzi8oe8dSUdvBgu9yS2UX1y9YEpYfZE_GhhXHH3g4rEk-W6WO0Zs95cVjzavVwQOH5T4APuUOKa6YiEFe-Xrrl7o/s320/DSCN2457.JPG" border="0" /></a>So, the girls first year was filled with all of the regular baby check-ups and then Amelia also had check ups with her neurosurgeon, orthopedic surgeon, and urologist every 3 months. We also started seeing her <span class="blsp-spelling-error" id="SPELLING_ERROR_0">ENT</span> every 6 months to follow her hearing loss. We had to take her to the audiologist to be fit and followed with her hearing aid, and that was about every 2-3 months. She received services through early intervention, which started when she was about 3 months old. She had a teacher that came, physical therapy, speech therapy, and occupational therapy. Most of her therapy was home based, which made our schedule much more manageable. The girls also slept a lot when they were babies (so much that I often wondered if they were <span class="blsp-spelling-error" id="SPELLING_ERROR_1">ok</span>), so trying to fit in appointments and therapy in between 3 naps a day presented its own challenges. But, it all worked out and we just kept on pushing through. Other than her shunt surgeries at 3 months old, Amelia only had one other surgery during her first year. It was bladder surgery at 9 months to place a <span class="blsp-spelling-error" id="SPELLING_ERROR_2">vesicostomy</span> to allow her bladder to <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">continuously</span> drain into her diaper, which would keep her bladder from overfilling in hopes of preventing kidney damage. With the <span class="blsp-spelling-error" id="SPELLING_ERROR_4">vesicostomy</span> we did not have to place her on a <span class="blsp-spelling-error" id="SPELLING_ERROR_5">catheterization</span> program as a baby. Things were going well, and we were doing an <span class="blsp-spelling-error" id="SPELLING_ERROR_6">ok</span> job of adjusting.<br /><br /><div>During their first year the girls were definitely BIG <span class="blsp-spelling-error" id="SPELLING_ERROR_7">spitters</span>. Both of them would spit up with almost every feeding. Needless to say, we were happy that we had paid for fabric protection on our sofa. Around 9 months old Hannah's spitting really improved, but Amelia's continued and got worse. Her pediatrician was also concerned that she was gaining weight a little on the slow side. After the girls turned 1, Amelia was diagnosed with reflux and we tried several different medications but none of them really helped. She continued to vomit a lot, including her solids. We got to a point that we had to take her off of all solid foods and got her transitioned to <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Pediasure</span>. During this time she stopped growing. She did not gain any weight for 4 months and she did not grow in length either. When she was 17 months old she was diagnosed as failure to thrive. Her reflux had become so severe that our best option for improvement was surgery. So, in Oct. 2004 she had a <span class="blsp-spelling-error" id="SPELLING_ERROR_9">Nissen</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_10">fundoplication</span> (they made the top of her stomach tighter to prevent reflux). She also had a feeding tube placed at that time so that we could supplement her nutrition while she slept at night. By the time she had the surgery and then during her recovery she developed a total aversion to taking food o<span class="blsp-spelling-error" id="SPELLING_ERROR_11">r</span> drink by mouth. She was tube fed only for several months. It has been 4 years since she had the surgery, and getting her to eat is still a huge struggle. We still use her feeding tube to supplement nutrition and fluids, but at least she is not on the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_12">continuous</span> pump at night anymore. She is still not able to take in enough by mouth to meet her calorie of fluid needs, but she has made improvements. She has had 4 years of feeding therapy, but we still <span class="blsp-spelling-corrected" id="SPELLING_ERROR_13">struggle</span> with her on a daily basis. Out of all of her issues, feeding has been the one that has been the most frustrating for me to work with. She has so many underlying medical issues that could be affecting her feeding, but it is the one thing that we struggle with at least 3 times a day (and then top it off with the tube feeds) and have seen so little progress. I am almost at the point now where I am thinking that: 1- she probably won't go on her first date still eating baby food and goldfish and 2- if she does then he is probably not going to care. (The picture above is Amelia a few days after her surgery for reflux). </div><br /><div>Amelia always does things in her time frame and no one e<span class="blsp-spelling-corrected" id="SPELLING_ERROR_14">lse's</span>. I work with her and she has lots of therapy, but I have taken away MY <span class="blsp-spelling-corrected" id="SPELLING_ERROR_15">time frame</span>. This has helped me tremendously. As long as I see progress being made I am happy. Sometimes it is painfully slow, but other times she just takes off.</div>Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.com1tag:blogger.com,1999:blog-4859314518367423605.post-1478001040013794682008-10-21T08:57:00.002-05:002008-10-21T10:16:55.005-05:00More Shocking News!!!After being home with both girls for almost a month and getting settled into a routine with them, it was time for Amelia's second surgery. When she was 5 weeks old she had surgery to place her shunt for hydrocephalus. That surgery went well and she only had to stay in the hospital one night. It was so hard for me to have to leave Hannah for the night, but it was something we knew that we would face over and over again. We also now knew that we would be facing a lifetime of "shunt issues". While shunts are life saving and a blessing, they can also be very tricky. Some people have the same shunt their entire life, others have multiple failures and infections. Amelia has had 7 shunt surgeries plus one failure without surgery, some due to failure and some due to infection. Her last failure was in December 2007, but she did not require surgery because her current shunt drains into the large blood vessels into her heart. This failure was resolved with some "clot busting" drugs. So needless to say, whenever Amelia is not acting quite like herself I usually worry and start thinking that her shunt is failing.<br /><br />After Amelia's first shunt surgery we went ahead and scheduled to have her hearing retested. She was 8 weeks old when I took her in. The night before her hearing test I remember sitting with her in my lap at the kitchen table. I would talk to her and she would "talk" back. She and Hannah both made the same type of baby sounds, so why should I worry. I was so convinced that everything was fine, that I took her to be tested by myself. Steven went to work that day and his mom came over to stay with Hannah.<br /><br />Amelia slept in my arms through most of her hearing test, which made it a little easier to get through. Finally, the first test was finished. I was completely shocked when the audiologist told me that Amelia had a profound hearing loss. I remember saying "but when I talk to her she talks back". What did a profound loss mean? Well, it meant that she might be able to hear a chainsaw or jet plane at close range. It meant that she was deaf. I remember crying in that dark, little room and feeling guilty for being sad that she could not hear. I told myself that I should just suck it up and be grateful that she was alive. I now wish that I would have given myself permission to fully grieve about her hearing loss at that time. The audiologist did a second test to find out what type of hearing loss she had, and we found out it was a sensorineural hearing loss.<br /><br />Within a month of the hearing loss diagnosis Amelia had a CT scan to look at her inner ear anatomy. We found out that her hearing loss was caused from an inner ear deformity called common cavity. Common cavity is pretty rare and amplification can be tricky. Amelia started wearing a hearing aid when she was 3 months old, but we were told that her best chance to hear sound would be with a cochlear implant. We quickly became overwhelmed with all of the information and choices for families with deaf children. Hearing aids and cochlear implants, to sign or not to sign (and if you do sign what type of sign), involvement in the deaf community/culture. With Amelia's hearing loss diagnosis, I knew that I would not be able to return to work full time. Her needs were going to be too great, but I knew that for my sanity that I would need to work some. I needed to keep something that resembled my "old" life. So, I work 1-2 days each week and it seems to be a nice balance for me.<br /><br />When Amelia was 21 months old, she had surgery to place a cochlear implant. We did not know what type of benefit she would receive from it because of her inner ear deformity. The doctor told us that realistically she would probably only hear environmental sounds. We feel very fortunate that Amelia is able to detect speech with her implant at almost normal hearing levels. We attempted to use an oral approach with her after she was implanted, in hopes that she would develop speech. While she did develop some speech, it was at an incredibly slow pace and as she got older she was becoming more frustrated. So, in February of this year we made the decision to start signing with Amelia. It was very hard at first to make the decision. We had worked so hard for 3 years at trying the oral approach. But, seeing how well she is doing now is making it much easier. We are all learning sign, but she is learning faster than we are. She is so smart and funny, and now that she can communicate better she can really show it.<br /><br />So, during all of this you might be wondering about what was going on with Hannah. She is completely typical and healthy. Before the girls were born I worried that she might not get enough attention, because of all of Amelia's needs. A few weeks after they were born, that worry was gone. Hannah was and still is "spirited". She always demanded her attention as a baby and makes sure that she gets enough even now. We love her for it and know that her "strong will" will be be a quality that will benefit her throughout her life.Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.com0tag:blogger.com,1999:blog-4859314518367423605.post-21026020838478470072008-10-05T16:52:00.013-05:002008-10-13T09:02:33.333-05:00May 13, 2003<img id="BLOGGER_PHOTO_ID_5256392063397316562" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKrwzwP0c_X6AtEHUviYkUerfYXiVFKPfkxJYORQ2b2N4PV8Qxs2pO6Uc_07GZDoOJu2MgIS-beaq269pen6sAOXTgFQuPIG9bsAhZtM3YkHm1vU5M8aEWzpbrSynuT3LIHfFDlyFqhY4/s200/DSCN0593.JPG" border="0" /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd_740S81Jn8S_864c69JFl1-ZJRBPVqZeUBSRwL4LR20gJeUX-NfoTNCN7KJ00_1AXtquE_A5R3B8EUp7joQSfDNqiPDTLIObJmLv8QDwtcw8psvLP4rtxGUiFcJjXVQeaGBznuD_L7Q/s1600-h/DSCN0607.JPG"><img id="BLOGGER_PHOTO_ID_5256392396021775234" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd_740S81Jn8S_864c69JFl1-ZJRBPVqZeUBSRwL4LR20gJeUX-NfoTNCN7KJ00_1AXtquE_A5R3B8EUp7joQSfDNqiPDTLIObJmLv8QDwtcw8psvLP4rtxGUiFcJjXVQeaGBznuD_L7Q/s200/DSCN0607.JPG" border="0" /></a><br /><br /><br /><br /><br /><br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd_740S81Jn8S_864c69JFl1-ZJRBPVqZeUBSRwL4LR20gJeUX-NfoTNCN7KJ00_1AXtquE_A5R3B8EUp7joQSfDNqiPDTLIObJmLv8QDwtcw8psvLP4rtxGUiFcJjXVQeaGBznuD_L7Q/s1600-h/DSCN0607.JPG"></a><br /><br />I was 34 4/7 weeks pregnant with the girls. I was tired and huge (my waist was 44 inches around) and wondering how I was going to make it another week. My C-section was scheduled for May 20. The doctors wanted to deliver me by 36 weeks because of Amelia's spina bifida. My pregnancy went very smoothly- I was able to work until 33 weeks and never went on bed rest.<br /><br />On the morning of May 13 I had been treated to a pedicure and then had a doctors appointment and ultrasound scheduled. At this point in my pregnancy I was seeing my doctor twice a week. The babies growth looked really good and Hannah was very active and doing everything that she was supposed to do. Amelia was just being a little less active that morning. So, the doctor wanted me to go get some lunch and come back for another ultrasound after to see if we could get her more active. I went to Wendy's for lunch and even drank my first real Coke in months. After that, Amelia was still not very actice. So, they put me on a monitor in the office and watched us for a little while. Around 4pm my doctor came back in and said that after consulting with the high risk OBs, they felt like it would be safest to go ahead and deliver the girls today- at 8pm. I managed to not completely freak out, but I was pretty scared. I wasn't even sure that I was completely ready yet, but the girls were going to come regardless of if I was ready or not.<br /><br /><div><div>After a very quick trip home to get our bags, Steven and I arrived at Vanderbilt at 6pm. After getting settled in and ready, I was taken back to the OR at about 8pm. I know that it was kind of busy in the OR before the girls came, but I don't remember all that much. But, I do remember the girls being born. Hannah came first at 8:21pm, and immediately started screaming and I knew that she was ok. It seemed like an eternity, but it was only 2 minutes later that Amelia was born. She did not cry immediately like Hannah did, but she did start up with a little cough and then she started to cry. We were so relieved that both girls were doing so well, they were not struggling with their breathing at all. Hannah was able to stay with Steven and I in the OR and then go to the well baby nursery, but Amelia had to go to the NICU. I only saw her for a few moments before she was taken to the NICU. 8 hours after she was born, I was able to get up and go see her in the NICU, but we were not able to hold her yet.</div><br /><div>One of the biggest risks for Amelia for the first 18 hours (until her surgery) would be infection due to her open spine. They kept a sterile bandage over her back until surgery, and she had to stay on her tummy. So, when she was 18 hours old she had her first surgery. Steven and I were able to be with her before they took her in and then afterwards when they brought her into the recovery room. When we saw her in the recovery room, she was lying on her back and it was the first time I had gotten a really good look at her face- she was beautiful. </div><br /><div>It is so hard to even put into words the range of emotions and thoughts that went through our minds. The reality of spina bifida was staring us in the face. We have this amazingly beautiful and perfect baby, but her legs did not move. Her knees would not completely straighten out. Her toes did not wiggle when I tickled her feet. She had a large spinal deformity on her back, that is essentially a bump. She had hydrocephalus and we did not know how long it would be before she had her second surgery to place her shunt. Not to mention keeping an eye on bladder and bowel function. All of this was stuff that is always in the back of your mind, but I could look in her eyes and see that sweet face and the stuff didn't matter. Of course I wanted her to be healthy, but that was not the case. We made the decision to try our best to give her every opportunity to be all that she can be regardless of how much work it takes from us. </div><br /><div>Hannah and I spent 4 days in the hospital. Hannah did really well, other than having a little trouble eating. She was so sweet and cute, and we couldn't get enough of her. Amelia spent a total of 17 days in the NICU. Those were some of the hardest days. I was so torn between my two babies- Hannah was at home with us, while Amelia was at the hospital by herself. We visited her everyday, but couldn't wait to get her home. Also, the hospital would not allow us to bring Hannah into the NICU, so the girls were seperated for their first 17 days.</div><br /><div>When Amelia was discharged from the hospital, we were given a list of referrals and follow-up appointments. We would need have her hydrocephalus monitored very closely, keep a close eye on her bladder and kidneys, make sure that she was eating enough to gain weight, make appointments with early intervention, and then follow up on her newborn hearing screen. Amelia failed her newborn hearing screen in the hospital, but I had decided to completely blow it off. A lot of babies failed, but in actuality they could hear. Plus, when I talked to her she would look at me. I do remember looking at her ears while she was still in NICU and noticing that she had a skin tag in front of her right ear and I even made a comment to Steven about it. An ear tag could indicate either hearing problems or kidney problems, but usually they meant nothing. I TOTALLY blew all of this off. We decided that we would wait until after she had her shunt surgery before we would take her to have her hearing tested again.</div></div>Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.com0tag:blogger.com,1999:blog-4859314518367423605.post-8817995019314329352008-09-29T15:16:00.008-05:002008-10-01T22:06:24.953-05:00First PicturesI decided that an interesting way to start our family's blog would be by sharing our story. It is kind of long, so it might take a more than one posting to get it all in. What better way to start than by sharing the very first picture of the girls.<br /><br /><br /><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjDpNrJjBIMiXAGbTQc9159mLxFxl1Sl-nOS0tOf3NofH9ZtEAfarKQ0FPokE0n2WaiuVs-P1pRYltAh6e56C5RgLDvCESgxibNi_s5Kx24TzFKfyX6GAtqDLcnePi6Z_CWyk8SwASfes/s1600-h/EmbryosJPG.jpg"><img id="BLOGGER_PHOTO_ID_5251540034214658946" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjDpNrJjBIMiXAGbTQc9159mLxFxl1Sl-nOS0tOf3NofH9ZtEAfarKQ0FPokE0n2WaiuVs-P1pRYltAh6e56C5RgLDvCESgxibNi_s5Kx24TzFKfyX6GAtqDLcnePi6Z_CWyk8SwASfes/s320/EmbryosJPG.jpg" border="0" /></a>Obviously, this is not your average first picture, but I think it is really neat. The girls were conceived through in vitro fertilization on Sept. 27, 2002. This picture was taken 5 days after conception, just a few hours before they were placed into my uterus. 9 days later, I found out that I was pregnant (there was speculation that it might be twins due to the high levels from my blood test). My first ultrasound was on Oct. 30, 2002. I was 6 weeks pregnant. There were two babies with two heartbeats. We were thrilled that we were having twins, but still cautious. A little over a week later I became very worried, and just felt like something was not right. I called the doctor, and they brought me in for another ultrasound. Everything looked perfect and I was released to my regular OB, who I would see in 2 weeks. I had another ultrasound at 10 weeks, and then again at 13 weeks. Everything continued to look perfect, and at 13 weeks they took a really early guess at the sexes- they thought it was 2 girls.<br /><br /><strong>January 13, 2003</strong><br />I was scheduled for another ultrasound to check on the babies' growth, and this was the day that we should definitely find out the sexes of the babies. I was 17 weeks. Steven decided to take the day off, and we were going to go look at nursery stuff after my appointment and we were going to celebrate our anniversary a few days early (our anniversary is Jan. 16). About a week earlier I started getting worried, thinking that something was wrong. In my mind I had gone through all sorts of things that could go wrong with a multiple pregnancy (this is where being an OB nurse is not a good thing). It had never crossed my mind that something could be wrong with one of the babies.</p><p>Baby A's ultrasound was perfect. It was a girl and she was growing well, all measurements were on target. Steven and I had decided long before we were pregnant that our first girl would be named Hannah. </p><p>During Baby B's ultrasound was when our life as we knew it would change forever. Steven and I had both noticed that the technician seemed to be taking so much longer with this baby and she was printing off a lot of pictures. We both noticed that baby B's head did not look as round as baby A's. In fact her head looked almost oval. Neither of us said a word, but we both were getting concerned. As the technician finished up she showed us the sex of the baby, and it was another girl. Then, she wanted to show us some things that she saw during the scan. She showed us her head and then her spine. During this time she told us that our baby had spina bifida and hydrocephalus. Absolutely nothing could have prepared us for that moment. It was like somone had come and completely knocked the breath out of you. I at least knew what spina bifida was, but Steven did not have a clue. The next few days were filled with appointments to find out more about her diagnosis. About 2 weeks later we decided on Baby B's name, Amelia Grace. </p><p>After our appointments, we found out so much more about Amelia's spina bifida. For those that are not familiar with spina bifida, it is when the neural tube fails to close during gestation. It occurs within the first 28 days after conception. The lesion can occur anywhere along the spine, and depending on where the lesion occurs determines how affected the child will be. We found out that her lesion was at T-10 and was open to her sacrum. She would not be able to walk and would not have control of her bladder and bowels. She also had hydrocephalus, which would require a shunt to drain the excess fluid off of her brain. Hydrocephalus affects about 80% of children with spina bifida. We also found out that she had Arnold Chiari II malformation, which is a structual abnormality involving the lower brainstem, upper spinal cord, and cerebellum. About 85-90% of children with spina bifida have this malformation. Complications from this malformation only affect a small percentage of children, but they can be severe. We also found out that she had a spinal deformity called kyphosis, which is an outward curvature of the spine. We were told that most children with spina bifida have average to above average intelligence, but often have learning disabilities. </p><p>All that we could do for the next 4 months was wait. We would not know her true level of functioning, when she would require a shunt, or if she would even survive. We were scared and overwhelmed. We prayed a lot, cried a lot, and had faith that everything was going to be ok. We tried to prepare ourselves for what it would be like after the girls were born, but it is hard enough to imagine the impact that newborn twins bring. Much less, adding all of the medical issues that we would be facing with Amelia. Despite all of this, we were still so excited and ready to have our babies.</p>Kristyhttp://www.blogger.com/profile/12791062098968884602noreply@blogger.com0