Eden had apts. today with Neurology and Neonatology. It made for a long day because they were both during her afternoon nap. I made sure to skip her morning nap so she would sleep on the way down. She slept barely over an hour but it was enough to allow her to be awake for her apts. Her first one was with neonatology. They are the ones who ask A LOT of developmental questions...is she sitting, is she crawling, etc. and then they also want her to do a certain amount of things right there so they can check them off her list. God is so good...she is completely on target for her adjusted age (because she was 3 weeks early) and only behind on two things for her actual age. The only reason she said that was because she just didn't do those two things there in the office. She didn't display the pincer grip and she didn't completely pull herself up to a standing. But she does both of those things at home so I say she is right on target! In her defense, the chair was a bit too high for her to pull herself up! She is amazing and they don't want to see her back until she is about 18 months!! YAHOO! Today she weighed 18 lbs 8.8 oz. and was 28.25" long.
Neurology was equally impressed. We got to see our resident that we have seen from the first time we were there for IS. She was ready to pop when we were there last and now her babe is already 6 months old! She couldn't believe how well Eden was doing. She really enjoyed playing with her and seeing how well she is developing. She said as much as she likes us she doesn't want to see us back for a YEAR!! We didn't get to see our regular doctors though because they were in a meeting. We did however see one that we saw when we were in the NICU back when Eden was born. He said he has seen a few Aicardi syndrome girls and was super impressed with Eden. He even said it makes him second guess the diagnosis but also agrees there is a mild end of the spectrum and that is where she probably falls! God is so good...have I said that yet?!!!
Showing posts with label Eden's doc. visits. Show all posts
Showing posts with label Eden's doc. visits. Show all posts
Thursday, November 01, 2012
Wednesday, September 12, 2012
MRI and Dr. Visit
We went to Iowa City today for another MRI to see if everything was still stable with Eden. Dr. Menezes met with us afterwards to discuss Eden's future care. The MRI showed no changes. The ventricles were stable and growing steadily with the rest of her body. Her head had grown and moved into the 85% but they said that really isn't in relation to her ventricles because like I said, they are stable. He didn't act concerned about her head size. He said the cyst that is in there has actually shrunk a little since our June MRI. This doesn't necessarily mean anything either since the cyst is hard to measure because of the shape. It is possible that it's pretty much the same size since birth. Dr. Menezes did exactly what I thought he would do. He basically told us if we aren't going to listen to his advice then he doesn't need to see us in his department anymore. I understand where he is coming from but wish we had more time. He really made me feel like he believes this would be the best care for her. He fought for why and I didn't hesitate to argue different things with him about my reservations. He was much more in tune with who Eden is. He asked questions about her development, played with her and interacted with her. I felt like he was looking at her as more then just another patient. Last time this was not the case. He could tell Brian and I were and have been really taking her care to heart and trying to diagnose her ourselves which we are completely under qualified to do. It has been a huge stress on my shoulders but at the same time I have never felt like we weren't doing what God wanted us to do. He got very sincere with us and grabbed my hand and I just said, "I really care about her and want what's best for her." He kindly said he cares a lot about her too and that we need to let him care for he like he knows how. I saw a softer side of Dr. Menezes. We agreed to do the surgery. I am scared but trusting. Dr. Menezes said since it isn't an emergency we could kind of pick when we wanted to do it. We asked what the longest was he would let us wait and he asked what the soonest was that we felt comfortable with? Together we came up with November 6th. It feels right and I feel like a weight has been lifted. God placed Dr. Menezes, this very intelligent, very skilled doctor in our lives for a reason...I need to trust. God is giving me peace about this and Brian is pretty happy we are going ahead with it too. I am so glad that Eden is this much older and we didn't do it way back in June like the doctor originally wanted to. God's timing is perfect! Now, let the prayers begin. I am going to be praying that if this isn't what God has planned for Miss Eden that he will make it very obvious. Eden has to have another MRI the day before her surgery and I am going to be praying that the MRI will show some kind of improvement and that Dr. Menezes won't need to operate at all! Hey, nothing is too big for God!
Friday, July 06, 2012
Second Opinion appointment...
Today was a long day...
We took the kids to CF for my mom to watch them. Brian's parents were out of town so they weren't able to do it this time. We got the girls to mom and dad's by 10ish. I nursed Eden and then we hopped in the car for our long drive. I think the day just felt that much longer since we had to run south before going back north, but it was worth it! I love and appreciate both sets of our parents for the help they provide in times such as these. It allows us to just focus on Eden completely! We were trying to leave in time to plan for stops to nurse Eden and to feed ourselves. We ended up arriving an hour early so we found where we needed to go and then went back to a home depot we saw on our way that was just a couple minutes away (big purchase-some lawn chairs!). Our appointment was at 3:45 and I think we walked out of there shortly before 5:30. We had so many questions and she never made us feel like we were wasting her time. Dr. Debbie Song told us in her opinion it would be ok to wait on the surgery. She said her brain tissue doesn't appear to be under any pressure right now. She showed us Eden's scans and said that if the tissue was under pressure it would just be flat, there wouldn't be any hills and valleys like we see on the scan. Her ventricles are very large, however, so she did say that it would be pretty impossible for her to get through life with ventricles that large, meaning she will need a shunt eventually. One of them is quite a bit larger then the other and the brain tissue is very minimal around it. It looks scary...I'm not going to lie. But I still feel like God is still telling me to hold off doing the surgery. Dr. Song's suggestion to us was to do another MRI in 6 months just to watch everything and make sure it's staying stable, but that we wouldn't necessarily say that it was time even after that. I really liked it when she walked in (us having been in the car for so long we kind of took over the room and just spread out Eden and myself on the floor playing with toys all around) and right away saw one of Eden's toys and said, "Oh, a sofi the giraffe...we know all about that one at our house!" I just felt like she could relate to us better than our other doctor. And when she said, "if it were my daughter...this is what I would do", I believed her. I felt overjoyed to be there and so thankful for her and her kindness. She said there isn't ever really going to be a time we decide is the best time for surgery. It is just going to be best to get her a little older. But at the same time we can't ignore that she has enlarged ventricles, we need to be monitoring it by doing periodic MRIs. I haven't mentioned anything about what she said about the cyst that is in there. This seemed to be a pretty big concern of Dr. Menezes (our first opinion). I think he was just being cautious in saying that if that cyst would need to be removed then there can't be any pressure from the ventricles on the brain tissue. He said the brain tissue needs to be lax so he can lift it out of the way to get to the cyst. Dr. Song said that type of cyst is really hard to get to and is rarely rarely removed. It's not growing so she said it will not need removed unless it would start causing seizures that we could tell were being caused by that cyst. She didn't want to tell us what to do and said we are welcome to come back to her if we decide our other doctor isn't a good fit. She was very clear in saying that we need to like our neurosurgeon because if/when she has the surgery we are going to get to know our surgeon very well and have a close relationship with them. I am not comfortable with Dr. Menezes but he is the best that we have found and I think he would do the best job at it. We are just trying to take it one day at a time. I find myself praying the Lord's prayer several times a day. In that prayer it says, "Give us this day our daily bread." meaning, give me just what I need for this day, Lord. I find so much peace in that and am able to enjoy Eden much more when I am not worrying about the things I have no control over anyway! God is so good to have put Dr. Song in our lives! We'll keep you posted on what Brian and I actually end up agreeing to do (since Brian still isn't convinced he wants to cancel Eden's surgery). Pray that God's will is done!
We took the kids to CF for my mom to watch them. Brian's parents were out of town so they weren't able to do it this time. We got the girls to mom and dad's by 10ish. I nursed Eden and then we hopped in the car for our long drive. I think the day just felt that much longer since we had to run south before going back north, but it was worth it! I love and appreciate both sets of our parents for the help they provide in times such as these. It allows us to just focus on Eden completely! We were trying to leave in time to plan for stops to nurse Eden and to feed ourselves. We ended up arriving an hour early so we found where we needed to go and then went back to a home depot we saw on our way that was just a couple minutes away (big purchase-some lawn chairs!). Our appointment was at 3:45 and I think we walked out of there shortly before 5:30. We had so many questions and she never made us feel like we were wasting her time. Dr. Debbie Song told us in her opinion it would be ok to wait on the surgery. She said her brain tissue doesn't appear to be under any pressure right now. She showed us Eden's scans and said that if the tissue was under pressure it would just be flat, there wouldn't be any hills and valleys like we see on the scan. Her ventricles are very large, however, so she did say that it would be pretty impossible for her to get through life with ventricles that large, meaning she will need a shunt eventually. One of them is quite a bit larger then the other and the brain tissue is very minimal around it. It looks scary...I'm not going to lie. But I still feel like God is still telling me to hold off doing the surgery. Dr. Song's suggestion to us was to do another MRI in 6 months just to watch everything and make sure it's staying stable, but that we wouldn't necessarily say that it was time even after that. I really liked it when she walked in (us having been in the car for so long we kind of took over the room and just spread out Eden and myself on the floor playing with toys all around) and right away saw one of Eden's toys and said, "Oh, a sofi the giraffe...we know all about that one at our house!" I just felt like she could relate to us better than our other doctor. And when she said, "if it were my daughter...this is what I would do", I believed her. I felt overjoyed to be there and so thankful for her and her kindness. She said there isn't ever really going to be a time we decide is the best time for surgery. It is just going to be best to get her a little older. But at the same time we can't ignore that she has enlarged ventricles, we need to be monitoring it by doing periodic MRIs. I haven't mentioned anything about what she said about the cyst that is in there. This seemed to be a pretty big concern of Dr. Menezes (our first opinion). I think he was just being cautious in saying that if that cyst would need to be removed then there can't be any pressure from the ventricles on the brain tissue. He said the brain tissue needs to be lax so he can lift it out of the way to get to the cyst. Dr. Song said that type of cyst is really hard to get to and is rarely rarely removed. It's not growing so she said it will not need removed unless it would start causing seizures that we could tell were being caused by that cyst. She didn't want to tell us what to do and said we are welcome to come back to her if we decide our other doctor isn't a good fit. She was very clear in saying that we need to like our neurosurgeon because if/when she has the surgery we are going to get to know our surgeon very well and have a close relationship with them. I am not comfortable with Dr. Menezes but he is the best that we have found and I think he would do the best job at it. We are just trying to take it one day at a time. I find myself praying the Lord's prayer several times a day. In that prayer it says, "Give us this day our daily bread." meaning, give me just what I need for this day, Lord. I find so much peace in that and am able to enjoy Eden much more when I am not worrying about the things I have no control over anyway! God is so good to have put Dr. Song in our lives! We'll keep you posted on what Brian and I actually end up agreeing to do (since Brian still isn't convinced he wants to cancel Eden's surgery). Pray that God's will is done!
Wednesday, June 06, 2012
Sedated MRI
My curious babe! She has gotten to know this stroller well!
We are here and sitting in the waiting room at 7AM...We stayed in a hotel last night. Eden was not ready to settle down after a long ride in the car. I think we were all up until about 10pm! I woke her at 3:30 to feed her since she can't have any fluids after 4. We are praising God that we don't have to work around her steroid and prilosec schedule since she is recently free of all her meds. It would have been difficult to get her dosages in her since she had to have her prilosec 30 minutes before eating. And she had to have her steroid in the morning as soon as possible. And I don't know if it is known that we actually had this scheduled 3 weeks ago (when she was still taking her meds) but she got sick and we had to cancel it! God's timing is perfect and he works everything (even a nasty cold) for good!
A man came and rubbed numbing cream all over her limbs where they will possibly put in her IV. Then they wrap those areas so she doesn't put her hands in her mouth. Purple wrap to match her purple shirt!! We had to give it about 30 minutes before they would come get us. She is a hungry girl since she hasn't been able to eat yet this morning! She did amazingly well! She didn't start fussing until right before they came and got us! She is such a good baby!
Nervous mommy waiting with her sweetie! I had to get a picture before they take her away!
Daddy too!
I got to rock her to 'sleep'. They put the IV in which took all four limbs to get it. They were going to have to use a breathing gas if they couldn't get the last one they tried. I was just praying so hard they would get it. They did! She was such a good baby through it all. I put her in my lap and sang to her and she just kind of whimpered through it all.
After she was out, I laid her back on the bed. She looks so helpless here. It was hard to see her like that. She just laid there whimpering. Almost like a cry. The guy said she did it the entire duration of the scan!
Here she is doing a little whimper. She really was completely out though!
Now the news of how the actual appointment went...
Dr. Arnold Menezes talked with us extensively about what he saw. He didn't see any changes at all in her ventricles or the cyst that is in there. Good news! However, he does feel like she needs a shunt. Bad news! He said that the brain tissue doesn't have enough room to develop the way that it needs to. It isn't under any pressure yet but he doesn't want it to get that way either. One of the ventricles is incredibly large leaving only a small sliver of area around the outer part of the head for brain tissue. If we remove some of the fluid then her brain tissue will have that much more room for growth. He did confirm that she has complete agenisis of the corpus collosum. He talked a little bit about the cyst in there too. He felt that it isn't a problem right now but that if it became a problem he would want full access to it. He doesn't think it would be very easy to get to if we don't get some of the fluid out of her ventricles. He wants the brain tissue to be lax so he can lift it out of the way to get to where the cyst is. It all sounds so horrible. The second he started talking about the shunt and wanting to schedule the surgery sooner rather than later, I started praying and immediately felt a strong resistance to the idea. Despite my feelings we went ahead and scheduled the surgery for next friday (June 15th). They talked to us about surgery prep and what to expect with the surgery and after. She will be hospitalized for 5-6 days. There is a chance of infection which can be really bad. She will have a programmable valve that will go behind her ear. The tubing will run over her clavicle and drain the CS fluid down into her tummy. This is all so new to us and such a shock. I am hoping to do a bunch of research and ask a bunch of questions and either feel better about it or not do the surgery. Brian and I have a lot to talk about!
Monday, June 04, 2012
2nd EEG and Steroid Update
Today was Eden's last day to take any prednisone. Since I last talked about Eden starting steroids she has been completely seizure free. On April 27th Eden had her second EEG to check her brain activity since starting the steroid. She still hadn't entered into hypsarrhythmia but there was some abnormal brain activity present. They even said there were areas of high voltage but didn't consider it to be hypsarrhythmia. Eden did much better for this EEG. The tech. was much more efficient and seemed to know exactly what she was doing. We were doing it the second time around so we knew what to expect and that made it easier on us, I think. Eden slept really good for about a half hour and then the tech had me wake her up to see her brain activity while she is waking up/awake. Eden was not happy to be woken up. It was pretty rough actually and even rougher as the tech was taking off the wires. Eden was super over tired. We went to our apt. and met with Dr. Matthews (head of the neurology department) and Dr. Hymali (the fellow). They gave us a tapering schedule to start after she had been on her steroids for two weeks which was April 30th. On that Monday we started her on 30 mg (down from 40mg), the next Monday (May 7th) she went down to 20mg, May 14 she went down to 10mg, May21st we started 10mg every other day (for 4 doses), May 29th Eden started 5mg every other day (for 4 doses) ending today! Dr. Matthews thought Eden looked excellent developmentally and was super excited that the steroids were working so well. She didn't offer us much hope that it would keep the seizures away though. While they don't know much about seizures in Aicaridi girls, she didn't think the steroid would keep them away for long even if we do get all the way to the end of the tapering schedule. She didn't want to see us back until November unless seizures become present again. IF the seizures return we will try the prednisone one more time (the chances of the same medicine working again are slim) at 40mg, if that doesn't work she will bump it up to 60mg. Either dose they will keep her on even longer and taper her off even more slowly. If neither dose works they will try a different drug altogether. We are so thankful for how far we have come. God is definitely taking care of and watching over her!
A little about the steroids: The side effects were awful. I can look back now with thankfulness and be so glad that we are out of it, but while we were in the middle of it I was feeling extremely overwhelmed. Eden was crabby, STARVING, tired, RAVENOUS, getting chunkier, eating all the time, smelly poops, and did I mention HUNGRY?!! I seriously fed her about 8-10 times a day. She got up AT LEAST once a night. And her poop was unbelievable! It was very obvious the last two weeks of her tapering schedule what her personality was really like because she was/is the HAPPIEST baby alive! She has even slept through the night again the last couple days!! God is so good! I am praying so hard for God's will in Eden's life, but really really praying we don't have to go back to that. It was through this all that Jesus was and still is carrying me! I couldn't get through any of this without Him and His promises.
A little about the steroids: The side effects were awful. I can look back now with thankfulness and be so glad that we are out of it, but while we were in the middle of it I was feeling extremely overwhelmed. Eden was crabby, STARVING, tired, RAVENOUS, getting chunkier, eating all the time, smelly poops, and did I mention HUNGRY?!! I seriously fed her about 8-10 times a day. She got up AT LEAST once a night. And her poop was unbelievable! It was very obvious the last two weeks of her tapering schedule what her personality was really like because she was/is the HAPPIEST baby alive! She has even slept through the night again the last couple days!! God is so good! I am praying so hard for God's will in Eden's life, but really really praying we don't have to go back to that. It was through this all that Jesus was and still is carrying me! I couldn't get through any of this without Him and His promises.
Tuesday, April 24, 2012
Eden is 4 MONTHS!!
Eden turned 4 months old on the 14th, but today (4-17-12) she had her check up! We decided not to do shots since she is still trying to get established with her steroids. She is looking great with everything else developmentally and growth wise. She is smiling, cooing, laughing, reaching, etc. We will have to come back to get some blood work done as well as to get her shots in a few more days.
Eden weighed in at 11 lbs. 12.5oz. and measured 24" long. Her head was 41.5cm and her chest was 37cm.
UPDATE***I took Eden in yesterday to get her blood work. She had to have her electrolytes checked to see how she was handling the steroid. Her levels looked normal. One thing Dr. Himali (our neurologist fellow in IC) said is that the lab tech must have squeezed it out of her heel (which she did) because her potassium level was very high. It probably should have been drawn out through her arm, but Dr. Himali said it was fine, we didn't need to re-do it.
I took Eden in today (4-24-12) to get her 4 month old shots. She handled them quite well! We also had to get her blood pressure checked since I was supposed to do that yesterday when I got her blood drawn. The steroids can also cause her bp to go way up so they need to check on that as well. It was something like 93/67 or 97/63...I can't remember! All I know is it is pretty normal and nothing to be concerned about for now!
On the 14th (the day before my birthday and the day Eden turned 4 months), Brian took all of the kids to town to pick out a card and gift for me. He left Eden and I home by ourselves. It was HEAVEN! We cuddled in the chair the whole time they were gone (almost an hour). When they got home Adah instantly took to cuddling with us and even brought her babies to fall asleep on her like Eden did on me! She is my little miss mommy!
Austin went to all the effort of setting up our small camping tent in our living room and put all kinds of pillows and blankets in there and then set up a movie for him and the girls. This is in an attempt to keep the girls out of my hair as a gift to me on my birthday! I only liked it for a little while!!! Have I mentioned that Austin is such a sweetie!
Friday, April 20, 2012
Iowa City Check-Up...
Eden had a check up today (4-19-12) in Iowa City. We had to have an MRI done at 10:30. Then we headed up to see the doctor. The radiologist hadn't read them yet but the PA told us there didn't look to be any changes. She thought that maybe there was even a little improvement! The cyst on her brain might even be a little smaller. She said she would call if the radiologist had anything else to say about it. They didn't say when they wanted to see us back but I am guessing it would be in the next 4-6 months.
**UPDATE** We got a call today (4-20-12) and the doctor said the radiologist read Eden's MRI and he believes that the left ventricle is larger then before. He wants to see her in a month to do a full sedated MRI. They are talking about having to do a shunt and even mentioned the possibility of removing that cyst in the long run. I feel scared all over again. I thought yesterday went so well, but now this...
We had a lot of time to kill in between apts. so we got to go sit down for lunch at Old Chicago. It was a nice relaxing meal! Eden 'talked' in her car seat. She seems to have found her voice today! She does this high pitch squeal. She takes a deep breath and lets it out and keeps going until she is out of air! It's so cute...and loud! She wore herself out while we were eating so we had some quiet time too! We ended up letting her take a long nap in the car before going into the hospital for our next apt. at 3:30.
We saw Ophthalmology at 3:30. Dr. Drack checked her eyes for tracking things and said she was seeing very well. She tested her vision and said she is a bit far sighted and has an astigmatism. She isn't worried about either. She just told us to watch for her eyes going crossed. They didn't have to pin her eyes open this time to scan them but they did still have to dilate them. Instead they used a tiny device and were able to see that her left eye is still completely healthy and her right eye is still the same. She was extremely happy with her sight. She even used the word 'mild' (as in she thinks Eden has a 'mild' case of Aicardi syndrome). We are praying for this to be the case! In her twenty years of service she said she has maybe seen a handful of girls with Aicardi. It's nice to see someone who has at least seen it before as it is a really rare syndrome! We don't have to go back to see her until the end of September!
God is so good! Another great day!
Weight: 12 lbs. 2oz.
Height: 24"
**UPDATE** We got a call today (4-20-12) and the doctor said the radiologist read Eden's MRI and he believes that the left ventricle is larger then before. He wants to see her in a month to do a full sedated MRI. They are talking about having to do a shunt and even mentioned the possibility of removing that cyst in the long run. I feel scared all over again. I thought yesterday went so well, but now this...
We had a lot of time to kill in between apts. so we got to go sit down for lunch at Old Chicago. It was a nice relaxing meal! Eden 'talked' in her car seat. She seems to have found her voice today! She does this high pitch squeal. She takes a deep breath and lets it out and keeps going until she is out of air! It's so cute...and loud! She wore herself out while we were eating so we had some quiet time too! We ended up letting her take a long nap in the car before going into the hospital for our next apt. at 3:30.
We saw Ophthalmology at 3:30. Dr. Drack checked her eyes for tracking things and said she was seeing very well. She tested her vision and said she is a bit far sighted and has an astigmatism. She isn't worried about either. She just told us to watch for her eyes going crossed. They didn't have to pin her eyes open this time to scan them but they did still have to dilate them. Instead they used a tiny device and were able to see that her left eye is still completely healthy and her right eye is still the same. She was extremely happy with her sight. She even used the word 'mild' (as in she thinks Eden has a 'mild' case of Aicardi syndrome). We are praying for this to be the case! In her twenty years of service she said she has maybe seen a handful of girls with Aicardi. It's nice to see someone who has at least seen it before as it is a really rare syndrome! We don't have to go back to see her until the end of September!
God is so good! Another great day!
Weight: 12 lbs. 2oz.
Height: 24"
Friday, February 10, 2012
Another Iowa City day!
Today we had another check up in Iowa City. We didn't have to leave our house until shortly after 10 this time. My mom came to watch the kids. It was nice to have her here for when Austin got out of school (as opposed to us taking the girls to her house). We first had an apt. with neonatology (high risk pediatrics). They pretty much did everything that we have been seeing AEA do...check her reflexes, how she kicks her legs, how she follows things with her eyes, etc. They also took a weight (9lbs. 9.8oz.) and height (22"). She is moving along perfectly with her developments so we are really happy there. They said they don't need to see her back until June when we go to see genetics. I am kind of wondering how necessary it is to continue to see them since we go to our regular doctor check ups and also have AEA coming in once a month to work with her and watch her development, but we'll just wait and see, maybe we will end up canceling our next apt. Our next apt. was with urology. Eden was so tired and just laid calm sleeping on the table while the tech did her ultrasound. It didn't take very long and then we had to go to our apt. to talk with the doctor about what they found. The first thing the nurse did was take her temp and then had us put a bag on her to catch a sample of pee. Then the resident came in from urology and was asking all these questions like, "have you ever noticed her in pain when she pees?" and "are you sure she is peeing consistently?" etc. We were getting really worried until he told us her bladder was no longer distended (enlarged). He said he really had no explanation for why it was distended both times it was checked when she was born, but that it isn't now!! He said we never have to come back to him again! GREAT NEWS! That's one doctor checked off the list!! We are continually amazed at God's grace! Eden is such a miracle to us and we couldn't be happier to have had another smooth day in Iowa City!
Thursday, January 19, 2012
Eden's Iowa City Check-up!
The SHORT version...A long day, but an excellent day. No changes in Eden's brain or eyes. She weighed in at 8lbs. 1oz. (with her clothes on). Growing like a weed...God is sooooo good!!
The LONG version...
Today was a long day but a really good long day! It started about 7:20am when we left for Iowa City. It's about a two and a half hour drive so we had to get going. First thing on the agenda was an MRI @ 10:45. Our paperwork said the MRI would take about an hour and knowing how still you have to lay for an MRI I was feeling so concerned that Eden would have to be sedated. When we got there I made sure to nurse her ahead of time so she was good to go for a while. When they called us back I asked if she was going to have to be sedated and if it would help for her to be swaddled. The lady responded naunchalauntly by saying, 'oh no, this will just take a couple of minutes.' I was so thankful (and a little irritated that we weren't told this ahead of time). After they got her situated in the machine they took all the pictures they wanted and then realized they didn't turn out because she was screaming the whole time. I went out to the waiting room and grabbed her paci and that worked like a charm. One of the workers laid on the bed with her and held her head still with some head phones over her ears to protect them from the sound of the machine. It was super loud! Even I had to wear ear plugs! When we were all done there we headed to our apt. with Dr. Lonnie Bilyeu (a PA) to discuss the MRI. She didn't feel there were any changes in her brain since birth but she did mention a cist that we hadn't heard anybody talk about since before she was born. When we were in Mason City for an ultrasound later in my pregnancy, Dr Hwang had mentioned a small cist but when we asked him about it he said it was the least of his worries. We never thought another thing about it and actually even forgot about it. When the doc. mentioned it she just said she wanted to ask the surgeon about it because the color of the fluid in it appeared to be different then the color in the ventricles and it shouldn't be that way because they both contain the spinal fluid so they should be the same color. The surgeon had just gone back into surgery so she said she would have to call us later in the afternoon (when she called us back she said the fluid looks like a different color because the fluid isn't moving around in the cist like it is in the ventricles). They are just going to watch the cist and make sure it doesn't grow. It hasn't grown since our stay in the NICU so they aren't really concerned about it. The doc measured her head and it is growing steadily so a very good appointment there for sure!! We had about an hour and a half to kill and needed to eat some lunch so we left and got some Arby's! When we got back to the hospital we had an apt. with Ohpthalmology (eye pediatrics). At first we saw a few residents before seeing Dr. Arlene Drack. The residents did a bunch of shining lights on her eyes, etc. to see how she reacted. It was obvious she is seeing out of both of her eyes. Then came the big test...they put some metal things on her eyelids to hold them open so they could scan her eyes and take some pictures of the back of her eyes. It was incredibly interesting to see the pictures. We hadn't seen her original scans from in the hospital either so it was all new. The whole thing only took about 10-15 minutes but Eden cried the whole time. I didn't want her to be in there alone so I went in with her and it was hard to watch! They just kept reminding me that she couldn't feel it because of the numbing drops. My poor baby! We called Brian into the room so Dr. Drack could explain it all to us. Her left eye is still completely healthy. The doctor doesn't feel like that will ever change, however on her right eye she still has the same lesions that were there when she was born. They also talked about some patches that are all over her retina. These were also there when she was born. They have never seen anything like it and really don't know what they are. They told us they could be lesions that were starting to form that never did, or that may still form...whatever they are they said they are really far off in the peripheral vision
so they shouldn't ever effect her vision anyway. As for the lesions that are there...they are right next to the optic nerve. There are two or three (I can't remember). They don't even think these should effect her vision except by small chance. It is possible that one of the lesions will block some of the nerves that are trying to get from the macula (the central part of our vision) to the optic nerve. This would cause a blindspot and maybe cause her right eye to become lazy. They said then she would just wear a patch on her left eye to try to strengthen her right eye. Dr. Drack offered us some other possibilities of what might be going on with her. She thought maybe she just has a mild case of the Aicardi Syndrome (she has only seen a couple cases in her 20 years of service and any she has heard of all have lesions on BOTH eyes), she also thought that there might be a couple other possibilities that have a much better outcome (I am not very capable of explaining these :)). Only time will tell as we watch her develope!
After all this we headed for home. We had to make a quick pit stop to feed Eden but we were home in time to put the kids in bed by 8! What an amazing and good day! It couldn't have gone any smoother! God is soooo good! We will be going back for a day just like to day (all the same apts. at the same time) on April 19th.
UPDATE on CMA test: When Eden was in the NICU they did a test called Chromosomal Microarray Analysis (CMA). We just got the results back recently. They said it didn't determine anything as far as a syndrome, etc. There was however a duplicated DNA on chromosome 1 and 3. This doesn't necessarily mean anything. It is very possible that if Brian or I were tested it may show we have this same thing. If one of us did have this, and since we are 'normal', that would rule out that it is even a factor in what is going on with Eden. We would have to be tested to determine this obviously and it isn't covered by insurance. I doubt we will do it since it isn't going to diagnos Eden with anything specific anyway.
The LONG version...
Today was a long day but a really good long day! It started about 7:20am when we left for Iowa City. It's about a two and a half hour drive so we had to get going. First thing on the agenda was an MRI @ 10:45. Our paperwork said the MRI would take about an hour and knowing how still you have to lay for an MRI I was feeling so concerned that Eden would have to be sedated. When we got there I made sure to nurse her ahead of time so she was good to go for a while. When they called us back I asked if she was going to have to be sedated and if it would help for her to be swaddled. The lady responded naunchalauntly by saying, 'oh no, this will just take a couple of minutes.' I was so thankful (and a little irritated that we weren't told this ahead of time). After they got her situated in the machine they took all the pictures they wanted and then realized they didn't turn out because she was screaming the whole time. I went out to the waiting room and grabbed her paci and that worked like a charm. One of the workers laid on the bed with her and held her head still with some head phones over her ears to protect them from the sound of the machine. It was super loud! Even I had to wear ear plugs! When we were all done there we headed to our apt. with Dr. Lonnie Bilyeu (a PA) to discuss the MRI. She didn't feel there were any changes in her brain since birth but she did mention a cist that we hadn't heard anybody talk about since before she was born. When we were in Mason City for an ultrasound later in my pregnancy, Dr Hwang had mentioned a small cist but when we asked him about it he said it was the least of his worries. We never thought another thing about it and actually even forgot about it. When the doc. mentioned it she just said she wanted to ask the surgeon about it because the color of the fluid in it appeared to be different then the color in the ventricles and it shouldn't be that way because they both contain the spinal fluid so they should be the same color. The surgeon had just gone back into surgery so she said she would have to call us later in the afternoon (when she called us back she said the fluid looks like a different color because the fluid isn't moving around in the cist like it is in the ventricles). They are just going to watch the cist and make sure it doesn't grow. It hasn't grown since our stay in the NICU so they aren't really concerned about it. The doc measured her head and it is growing steadily so a very good appointment there for sure!! We had about an hour and a half to kill and needed to eat some lunch so we left and got some Arby's! When we got back to the hospital we had an apt. with Ohpthalmology (eye pediatrics). At first we saw a few residents before seeing Dr. Arlene Drack. The residents did a bunch of shining lights on her eyes, etc. to see how she reacted. It was obvious she is seeing out of both of her eyes. Then came the big test...they put some metal things on her eyelids to hold them open so they could scan her eyes and take some pictures of the back of her eyes. It was incredibly interesting to see the pictures. We hadn't seen her original scans from in the hospital either so it was all new. The whole thing only took about 10-15 minutes but Eden cried the whole time. I didn't want her to be in there alone so I went in with her and it was hard to watch! They just kept reminding me that she couldn't feel it because of the numbing drops. My poor baby! We called Brian into the room so Dr. Drack could explain it all to us. Her left eye is still completely healthy. The doctor doesn't feel like that will ever change, however on her right eye she still has the same lesions that were there when she was born. They also talked about some patches that are all over her retina. These were also there when she was born. They have never seen anything like it and really don't know what they are. They told us they could be lesions that were starting to form that never did, or that may still form...whatever they are they said they are really far off in the peripheral vision
so they shouldn't ever effect her vision anyway. As for the lesions that are there...they are right next to the optic nerve. There are two or three (I can't remember). They don't even think these should effect her vision except by small chance. It is possible that one of the lesions will block some of the nerves that are trying to get from the macula (the central part of our vision) to the optic nerve. This would cause a blindspot and maybe cause her right eye to become lazy. They said then she would just wear a patch on her left eye to try to strengthen her right eye. Dr. Drack offered us some other possibilities of what might be going on with her. She thought maybe she just has a mild case of the Aicardi Syndrome (she has only seen a couple cases in her 20 years of service and any she has heard of all have lesions on BOTH eyes), she also thought that there might be a couple other possibilities that have a much better outcome (I am not very capable of explaining these :)). Only time will tell as we watch her develope!
After all this we headed for home. We had to make a quick pit stop to feed Eden but we were home in time to put the kids in bed by 8! What an amazing and good day! It couldn't have gone any smoother! God is soooo good! We will be going back for a day just like to day (all the same apts. at the same time) on April 19th.
UPDATE on CMA test: When Eden was in the NICU they did a test called Chromosomal Microarray Analysis (CMA). We just got the results back recently. They said it didn't determine anything as far as a syndrome, etc. There was however a duplicated DNA on chromosome 1 and 3. This doesn't necessarily mean anything. It is very possible that if Brian or I were tested it may show we have this same thing. If one of us did have this, and since we are 'normal', that would rule out that it is even a factor in what is going on with Eden. We would have to be tested to determine this obviously and it isn't covered by insurance. I doubt we will do it since it isn't going to diagnos Eden with anything specific anyway.
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