On Thursday, Jordan saw Lynn Fagerman the nurse practitioner at Dr. Burdo-Hartman's office (neurodevelopmental pediatrics). Jordan weighed in at 18 lbs 9 oz - that's 3 pounds gained in just over 2 months!!! That is a HUGE increase in a short amount of time! She was 28.3 in long - she is steadily increasing at the normal rate of growth for length. She is currently 16 1/2 months old but is the weight of an average 9 month old and length of an average 10 month old. She is just below the 3rd percentile on the charts. This was exciting news because we have been wondering if she would ever reach the minimums on the chart. I'm pretty sure that by her next appt in 3 months she is likely to be on them!!
Over the course of the next month we will be transitioning Jordan from 6 feeding per day to 5. We will be gradually dropping the amount of her 10 or 11 pm feeding while increasing the other 5 per day. The overall amount per day will remain the same, but we will substitute 1/2 of her Pediasure with Pediasure with Fiber.
We will be stopping her Zantac in the next few days as her medication runs out. This was to reduce the amount of acid in her stomach due to her severe reflux. Since having the Nissen, she is unable to reflux so it isn't so much of a problem anymore. I am slightly concerned that the acid will affect the skin around her tube site but I will watch it closely.
They will be scheduling Jordan for another videofluoroscopy and oral motor evaluation at Mary Free Bed after the first of the year. After that she will begin therapy again and we will begin to reintroduce oral feeding. Lynn suggested waiting until January becasue at that time her feeding will again become very long and somewhat complicated. I will need to attempt to feed some food orally and the calculate what amount of nutrition was received (due to thickening the Pediasure) and subtract that from the amount needed and supply the remainder amount through the tube. Her feedings will probably take at least 45 minutes at that point. I am excited to move forward with oral feeding, but am happy to be able to get through the busy holiday season first!
I discussed with Lynn all of the "little things" we notice that are different about Jordan and why they don't add up to anything. She explained that things such as her ear tags, simeon crease in her hand, straight eyebrows, extra fat pads on her palms and heels are called "soft signs" and can help identify a specific diagnosis but don't necessarily always add up to one. In Jordan's case, Dr. Toriello (geneticist) evaluated her and confirmed through chromosomal testing that she didn't have any of the specific syndromes or disorders that those signs could indicate. Lynn encouraged us to continue to have her evaluated over time by Dr. Toriello as Jordan's features and symptoms could change and a future diagnosis is still possible.
One of the main concerns I brought up was how Jordan still falls over backward several times per day. This is something that most kids stop doing fairly soon after learning to sit. She explained that Jordan has Hypotonia which is abnormally low muscle tone. She said that it is fairly significant in her core muscles throughout her torso but also in her arms and legs. She noticed it becasue of Jordan's posture when sitting. She encouraged me to work with her therapist through Early On to strengthen those muscles and hopefully we will see her falling over less. That is also the reason Jordan has difficulty standing for any length of time. She has about a 5-10 second limit and then she either sits down or starts leaning over whatever she has pulled up on to try to support herself. Again, we need to work on strengthening those muscles through therapy.
Overall, I was very pleased with this appointment because it was so throrough and complete. We were with Lynn for an hour and I felt all of my questions were answered. I also feel more comfortable knowing that if questions arise, I can call at anytime and discuss them with her.
Saturday, November 1, 2008
Tuesday, October 28, 2008
You've Come a Long Way, Baby!!!
Jordan is developing so quickly it is amazing to us!! She is now pulling up on anything and everything - the couch, her music table, window sills, and even my legs!! I can't believe that only a few short months ago she was not even crawling! It is very encouraging to see her blossom just as we have been praying!
I have been doing some research on mild cerebral palsy and found some interesting things. Most people with level 1 or 2 (Jordan's diagnosis) are able to walk without assistance (braces, walkers, etc) but struggle with issues with balance and coordination. It helps explain why Jordan still falls over backward when sitting sometimes. I read that many are able to participate in sports, but need to be directed toward certain ones. Soccer and basketball might be difficult for her but swimming and martial arts are highly recommended. I am in the process of doing some investigating to see if there are scholarships available to get her into a swimming class at the YMCA. She loves her bath and I'm sure she would love the pool!! Overall, I felt encouraged that while Jordan may seem behind in meeting her developmental milestones now, it is normal and that in time, she is likely to be able to participate in activities on her own!!
Jordan's speech is still significantly delayed and we mostly hear only the "b" sound and an occasional "g" or initiating vowel sound. However, she LOVES to imitate - clapping, stomping feet, etc. so we are working on sign language with her. I did some with Conner and I am trying to familiarize myself with the signs again as well as several new ones so we can encourage communication with her. Although I am still waiting for the day she says "mama!"
Jordan's personality is starting to come out as well! She has started having temper tantrums when she doesn't get her way. If we take something away from her that she wants (although shouldn't have), she arches her back and flips herself backward and cries! She has hurt my wrist a few times so I am VERY careful how I am positioned when I take it now. She definitely knows what she wants and expresses that to us clearly! She also loves to play hide & seek! She will go around a corner and peek back at me and then do it over and over. It is adorable to see her smile and laugh when she's playing!
I am so thankful to all of you for your prayers! God has blessed us with an amazing daughter and we feel grateful that we are given the opportunity to raise her! She has come so far and yet we know that she still has so much yet to achieve! Continue to keep her in your prayers and I will do my best to keep you updated through the blog.
I have been doing some research on mild cerebral palsy and found some interesting things. Most people with level 1 or 2 (Jordan's diagnosis) are able to walk without assistance (braces, walkers, etc) but struggle with issues with balance and coordination. It helps explain why Jordan still falls over backward when sitting sometimes. I read that many are able to participate in sports, but need to be directed toward certain ones. Soccer and basketball might be difficult for her but swimming and martial arts are highly recommended. I am in the process of doing some investigating to see if there are scholarships available to get her into a swimming class at the YMCA. She loves her bath and I'm sure she would love the pool!! Overall, I felt encouraged that while Jordan may seem behind in meeting her developmental milestones now, it is normal and that in time, she is likely to be able to participate in activities on her own!!
Jordan's speech is still significantly delayed and we mostly hear only the "b" sound and an occasional "g" or initiating vowel sound. However, she LOVES to imitate - clapping, stomping feet, etc. so we are working on sign language with her. I did some with Conner and I am trying to familiarize myself with the signs again as well as several new ones so we can encourage communication with her. Although I am still waiting for the day she says "mama!"
Jordan's personality is starting to come out as well! She has started having temper tantrums when she doesn't get her way. If we take something away from her that she wants (although shouldn't have), she arches her back and flips herself backward and cries! She has hurt my wrist a few times so I am VERY careful how I am positioned when I take it now. She definitely knows what she wants and expresses that to us clearly! She also loves to play hide & seek! She will go around a corner and peek back at me and then do it over and over. It is adorable to see her smile and laugh when she's playing!
I am so thankful to all of you for your prayers! God has blessed us with an amazing daughter and we feel grateful that we are given the opportunity to raise her! She has come so far and yet we know that she still has so much yet to achieve! Continue to keep her in your prayers and I will do my best to keep you updated through the blog.
Sunday, October 5, 2008
Standing, Clothes, and Another Dr. Appt.
Friday night Derrick and I were sitting at the table and Jordan was in the port-a-crib while we ate dinner. Out of the corner of my eye, I saw her sit down. I wasn't sure, but I kept watching and the next thing I knew, she pulled herself up to standing!!! Derrick and I watched in AMAZEMENT as our little girl continued to pull herself up over and over again (she can only stand for a few seconds)!!! I have been working with her for several weeks on pulling up to standing. If she's wearing her "hip-helpers" and I am helping keep her feet straight and guiding her up, she can do it, but I had never seen her do it on her own. We are very encouraged by this accomplishment as it shows her strength increasing and her desire to be mobile driving her forward meet milestones!
This past week, the weather turned colder and I had to face the fact that summer is over and it was time to put away the summer clothes and get out the fall one's. I tried some of her outfits on her and realized that she had FINALLY outgrown the 3-6 month clothes she has been wearing for a YEAR!!! Last spring I started using some 6 month clothes and mid-summer I even used a few 9 month outfits. I am now able to put her into 12 month clothes because she is gaining weight and getting bigger in her belly. She has consistently been so skinny that the waist of outfit's were always too big.
Unfortunately, since her tube leaks constantly, we have quite a bit of staining on some of her clothes. I am trying to be careful when dressing her in nice/cute clothes to cover the tube with an extra pad of gauze to try to avoid stains. She has an appointment with the surgeon tomorrow afternoon to have them address some of the problems we have been having with the leaking and tissue growth. We also had an internal stitch work it's way up the tube to the button - they didn't feel it was a big problem so we had to wait a few days to have it checked out. I'm not sure if they will put the new tube in, but I will bring it along with me in case they can.
This past week, the weather turned colder and I had to face the fact that summer is over and it was time to put away the summer clothes and get out the fall one's. I tried some of her outfits on her and realized that she had FINALLY outgrown the 3-6 month clothes she has been wearing for a YEAR!!! Last spring I started using some 6 month clothes and mid-summer I even used a few 9 month outfits. I am now able to put her into 12 month clothes because she is gaining weight and getting bigger in her belly. She has consistently been so skinny that the waist of outfit's were always too big.
Unfortunately, since her tube leaks constantly, we have quite a bit of staining on some of her clothes. I am trying to be careful when dressing her in nice/cute clothes to cover the tube with an extra pad of gauze to try to avoid stains. She has an appointment with the surgeon tomorrow afternoon to have them address some of the problems we have been having with the leaking and tissue growth. We also had an internal stitch work it's way up the tube to the button - they didn't feel it was a big problem so we had to wait a few days to have it checked out. I'm not sure if they will put the new tube in, but I will bring it along with me in case they can.
Tuesday, September 23, 2008
GROWING!!!
Last week I stopped by the pediatrician's office to pick up some papers for Jordan's therapy and I asked if I could have a weight check to see how she's grown in the past month since her g-tube was put in. Jordan weighed 16 lbs 10 oz.
That's a whole pound gained in a month!!!!!
At 6 months she weighed 13 lbs 9 oz and was still only 15 lbs 10 oz on the day of her surgery at 14 months - it took her 8 months to gain only 2 lbs and we now have a full pound in one month!!
Today at the geneticist's office, they measured her length and she was 28 1/4 in long. At her last feeding therapy on 8/12, she was 27 in. That's over an inch growth in length in just over a month! Again, we are very pleased to see this in her. In fact, we notice more than anything that she's starting to look longer.
When charted, she is now only slightly under the 5th percentile for length and is actually the length of an average 10 month old! Her weight is catching up, but is still significantly below the 5th percentile and is the weight of an average 7 month old! She still needs to keep packing on the pounds!!
I guess that means I should start lifting weights because this girl is getting bigger!!!
That's a whole pound gained in a month!!!!!
At 6 months she weighed 13 lbs 9 oz and was still only 15 lbs 10 oz on the day of her surgery at 14 months - it took her 8 months to gain only 2 lbs and we now have a full pound in one month!!
Today at the geneticist's office, they measured her length and she was 28 1/4 in long. At her last feeding therapy on 8/12, she was 27 in. That's over an inch growth in length in just over a month! Again, we are very pleased to see this in her. In fact, we notice more than anything that she's starting to look longer.
When charted, she is now only slightly under the 5th percentile for length and is actually the length of an average 10 month old! Her weight is catching up, but is still significantly below the 5th percentile and is the weight of an average 7 month old! She still needs to keep packing on the pounds!!
I guess that means I should start lifting weights because this girl is getting bigger!!!
Appointment with Genetist, Helga Toriello
This morning Derrick and I took Jordan to Helga Toriello, the geneticist in Grand Rapids. We met with a genetic counselor for about 45 minutes going over the paperwork we had filled out and answering many questions about our medical history. She wanted to know everything about Jordan's pregnancy and our other children as well as info on our family medical history. During this process she mentioned that the chromosomal testing came back normal. We had not heard that until this point and while their was some relief, we still wondered what was going on with our baby girl.
When Dr. Toriello came in, Jordan was sitting on my lap. She stood and examined her for quite a while making comments about features she notices and asking questions about things that had been brought up by other doctors and specialists. Some she agreed with, others she dismissed. She saw the Simean Crease on her hands, the extra padding on her palms and examined her heels. She said her jaw didn't seem recessed, but was rather short, which she said was similar to mine. She checked the measurement of her eye-spacing and identified that as normal - in fact she said she had Derrick's eyes. She was most intrigued by her brow-line. I'm not exactly what she saw, but it was the most prominent facial feature that she focused on.
Dr. Toriello felt that some of the small stature and delay in development may be a result of the lack of nutrition that Jordan was receiving. She did however, want to examine the pathology report on the small placenta because she felt that there could be a connection to that, her intra-uterine growth restriction, and her current small size. She was leaning mostly on a chromosome disorder called UPD, Uniparental Disomy. From what she explained and what I have read online, it basically means that on one of Jordan's 46 chromosomes, she inherited an extra chromosome from me. A normal baby receives one chromosome from mom and one from dad. If Jordan received 2 from me for a specific chromosome (they mentioned 7) and 1 from Derrick, then at some point tried to correct itself and got rid of the extra chromosome, but got rid of Derrick's and not the extra one from me, then she would end up with what's called maternal UPD7. This is most commonly associated with severe growth restriction.
We now have to wait for the report from Dr. Toriello in the next few weeks and see what happens with Jordan in the next 8 months. We will then follow-up with Dr. Toriello and see what kinds of improvements Jordan has made now that her nutritional levels are where they should be. If we feel she has made up significant ground in growth and development, we may not pursue any further testing. If we feel that Jordan is still significantly behind in development and still considerably small in stature, we may process through the testing for maternal UPD. This would require blood samples from Derrick, myself and Jordan. Essentially we will be testing paternity on the chromosomes that they feel may be affected. If one of them doesn't possess any of Derrick's genes, we have maternal UPD.
One of the biggest things Dr. Toriello pointed out was that she didn't feel that the results of these tests would have any impact on Jordan's current treatment. More than anything it would identify what to expect in her future growth and development.
I suppose I should be thrilled that we ruled out several of the chromosomal disorders that I have spent hours researching and wondering if Jordan had. Unfortunately, I guess I still feel like we are floating around without any solid answers. I am relieved that there seem to be no strong indications of anything that will have a HUGE impact on Jordan's life. The strongest thing Dr. Toriello indicated was that she might be small in stature. As a female, Derrick and I are less concerned that she might be extremely petite. We keep joking that she might be a fabulous gymnast because she is extremely strong and flexible and is packaged in such a small bundle of energy! Can't you just see her flipping herself around on a gymnastics mat??
Thank you all for your encouragement and prayers. Please continue to pray for Jordan and our family as we may not have SOLID answers for many months to come. Thank you for being a part of this journey with us and I will continue to keep everyone updated through this blog.
When Dr. Toriello came in, Jordan was sitting on my lap. She stood and examined her for quite a while making comments about features she notices and asking questions about things that had been brought up by other doctors and specialists. Some she agreed with, others she dismissed. She saw the Simean Crease on her hands, the extra padding on her palms and examined her heels. She said her jaw didn't seem recessed, but was rather short, which she said was similar to mine. She checked the measurement of her eye-spacing and identified that as normal - in fact she said she had Derrick's eyes. She was most intrigued by her brow-line. I'm not exactly what she saw, but it was the most prominent facial feature that she focused on.
Dr. Toriello felt that some of the small stature and delay in development may be a result of the lack of nutrition that Jordan was receiving. She did however, want to examine the pathology report on the small placenta because she felt that there could be a connection to that, her intra-uterine growth restriction, and her current small size. She was leaning mostly on a chromosome disorder called UPD, Uniparental Disomy. From what she explained and what I have read online, it basically means that on one of Jordan's 46 chromosomes, she inherited an extra chromosome from me. A normal baby receives one chromosome from mom and one from dad. If Jordan received 2 from me for a specific chromosome (they mentioned 7) and 1 from Derrick, then at some point tried to correct itself and got rid of the extra chromosome, but got rid of Derrick's and not the extra one from me, then she would end up with what's called maternal UPD7. This is most commonly associated with severe growth restriction.
We now have to wait for the report from Dr. Toriello in the next few weeks and see what happens with Jordan in the next 8 months. We will then follow-up with Dr. Toriello and see what kinds of improvements Jordan has made now that her nutritional levels are where they should be. If we feel she has made up significant ground in growth and development, we may not pursue any further testing. If we feel that Jordan is still significantly behind in development and still considerably small in stature, we may process through the testing for maternal UPD. This would require blood samples from Derrick, myself and Jordan. Essentially we will be testing paternity on the chromosomes that they feel may be affected. If one of them doesn't possess any of Derrick's genes, we have maternal UPD.
One of the biggest things Dr. Toriello pointed out was that she didn't feel that the results of these tests would have any impact on Jordan's current treatment. More than anything it would identify what to expect in her future growth and development.
I suppose I should be thrilled that we ruled out several of the chromosomal disorders that I have spent hours researching and wondering if Jordan had. Unfortunately, I guess I still feel like we are floating around without any solid answers. I am relieved that there seem to be no strong indications of anything that will have a HUGE impact on Jordan's life. The strongest thing Dr. Toriello indicated was that she might be small in stature. As a female, Derrick and I are less concerned that she might be extremely petite. We keep joking that she might be a fabulous gymnast because she is extremely strong and flexible and is packaged in such a small bundle of energy! Can't you just see her flipping herself around on a gymnastics mat??
Thank you all for your encouragement and prayers. Please continue to pray for Jordan and our family as we may not have SOLID answers for many months to come. Thank you for being a part of this journey with us and I will continue to keep everyone updated through this blog.
Thursday, September 18, 2008
Mid-September Update (creative title, huh??)
WOW! It's been a while since I've posted anything! Life is busy, but there have been no HUGE events to write about. Jordan continues to do well with her tube feedings. We saw the surgeon last week and other than some granulation tissue that is forming around the tube site, everything looks good. He treated that but we have some growing again in a different location - I will be calling him about this soon. We did determine that her valve isn't working properly which is causing a considerable amount of leaking. This basically requires me to change her gauze frequently and use a small hairband to keep it closed.
Jordan started group therapy at Ken-O-Sha last week and I think it will be good. Jordan is by far the most active of the bunch - they are called the "Rug Rats"! I suppose she maybe fit better into this group before she started crawling and getting into everything as they are all non-mobile. There are 8 kids and their parents' in the group and we sing some songs while doing motions with the kids and then work with them on some of the equipment the school has, then the therapists work with the kids for a while and the parents leave to talk about life with a child with disabilities, and then we come back for a closing song. It is amazing how each of the children in her group all have individual challenges they are facing and things they are working to accomplish. It helps me to see that I'm not the only one who is faced with the daily difficulties of a child with special needs.
We will be meeting with Dr. Helga Toriello next week on Tuesday, September 23. We are truly hoping for some answers regarding if Jordan has some sort of chromosomal syndrome. The doctors have mentioned some and I have spent hours doing online research and discovered that all it does is worry me more!! I have decided to wait to see what we find out next week. Please be praying for this appointment and whatever results it may reveal.
I have lots of pics to post of Jordan so I will try to get to them in the next few days!!
I got my bandages off my wrist a few days ago and I am finding it difficult to adjust to taking it easy when I have free use of my hand/arm. I have hurt it a couple of times trying to hold Jordan or picking Conner up. Please pray for continued healing. I have also been extremely exhausted since Jordan's surgery. I was up for a week for night feedings and then school started and I have been getting up by 6am to get Mak out the door. I am trying to adjust my schedule so I get more sleep, but it has been difficult. Please pray for energy for me to get through my busy days and to be able to care for my family.
Derrick is scheduled to have surgery on his right foot on September 30. This is the same procedure he had done on his left foot in January. The recovery time is long and it is difficult for me to have little or no help for a week or so. Please pray for a successful surgery and quick recovery and healing.
I have often times wondered why I don't just collapse, start crying, and give up with everything I feel like I am dealing with right now. Then I remember that all of you are praying for us and God is carrying us through it. I so thankful for our friends and those that have prayed for us during this time. Please continue to pray as I have felt more burdened with things lately. Maybe it's that we aren't in the middle of the storm so much anymore with Jordan, but we are faced with daily challenges and continue to need your prayers. Thank you so much for your support and encouragement!!
Jordan started group therapy at Ken-O-Sha last week and I think it will be good. Jordan is by far the most active of the bunch - they are called the "Rug Rats"! I suppose she maybe fit better into this group before she started crawling and getting into everything as they are all non-mobile. There are 8 kids and their parents' in the group and we sing some songs while doing motions with the kids and then work with them on some of the equipment the school has, then the therapists work with the kids for a while and the parents leave to talk about life with a child with disabilities, and then we come back for a closing song. It is amazing how each of the children in her group all have individual challenges they are facing and things they are working to accomplish. It helps me to see that I'm not the only one who is faced with the daily difficulties of a child with special needs.
We will be meeting with Dr. Helga Toriello next week on Tuesday, September 23. We are truly hoping for some answers regarding if Jordan has some sort of chromosomal syndrome. The doctors have mentioned some and I have spent hours doing online research and discovered that all it does is worry me more!! I have decided to wait to see what we find out next week. Please be praying for this appointment and whatever results it may reveal.
I have lots of pics to post of Jordan so I will try to get to them in the next few days!!
I got my bandages off my wrist a few days ago and I am finding it difficult to adjust to taking it easy when I have free use of my hand/arm. I have hurt it a couple of times trying to hold Jordan or picking Conner up. Please pray for continued healing. I have also been extremely exhausted since Jordan's surgery. I was up for a week for night feedings and then school started and I have been getting up by 6am to get Mak out the door. I am trying to adjust my schedule so I get more sleep, but it has been difficult. Please pray for energy for me to get through my busy days and to be able to care for my family.
Derrick is scheduled to have surgery on his right foot on September 30. This is the same procedure he had done on his left foot in January. The recovery time is long and it is difficult for me to have little or no help for a week or so. Please pray for a successful surgery and quick recovery and healing.
I have often times wondered why I don't just collapse, start crying, and give up with everything I feel like I am dealing with right now. Then I remember that all of you are praying for us and God is carrying us through it. I so thankful for our friends and those that have prayed for us during this time. Please continue to pray as I have felt more burdened with things lately. Maybe it's that we aren't in the middle of the storm so much anymore with Jordan, but we are faced with daily challenges and continue to need your prayers. Thank you so much for your support and encouragement!!
Monday, September 8, 2008
Doing Well!
Jordan has been doing really well! She is taking her feedings without any problems. The biggest difficulty is when she pulls the feeding tube out from the button in her belly and her Pediasure starts dripping all over the place!! This happens a couple of times a day! I will be talking to her surgeon at her appt. on Wednesday to see if he would be willing to put the other kind of button in - it locks the feeding tube in place so it won't disconnect during a feeding. I am also looking forward to an official weight check. The site where the button was placed is looking a little raw so I am trying to keep it clean and dry to allow it to heal. She still plays with it so I am keeping it covered as much as possible.
Last week Jordan also started back with her Early On therapist. Betsy brought "hip helpers" that are like bike shorts with the legs sewn together. This puts Jordan's legs in the proper position for crawling and moving around. By strengthing the proper muscles and getting her used to that position, we are hoping that she will be able to do it on her own eventually. We worked on getting her to stand from sitting on my lap. This week we also start her group therapy at Ken-O-Sha.
I had my wrist surgery last week and I am struggling with doing many of the daily tasks I have taken for granted. I am still taking pain meds because I often find myself hurting my wrist by doing things I probably shouldn't be doing, but need to be done. I will have my bandage on for a little over a week more and then I just have to take it easy for a couple of weeks. Hopefully, I will have full function of my hand/wrist by the end of September.
Last week Jordan also started back with her Early On therapist. Betsy brought "hip helpers" that are like bike shorts with the legs sewn together. This puts Jordan's legs in the proper position for crawling and moving around. By strengthing the proper muscles and getting her used to that position, we are hoping that she will be able to do it on her own eventually. We worked on getting her to stand from sitting on my lap. This week we also start her group therapy at Ken-O-Sha.
I had my wrist surgery last week and I am struggling with doing many of the daily tasks I have taken for granted. I am still taking pain meds because I often find myself hurting my wrist by doing things I probably shouldn't be doing, but need to be done. I will have my bandage on for a little over a week more and then I just have to take it easy for a couple of weeks. Hopefully, I will have full function of my hand/wrist by the end of September.
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