I have recently come to realize that the importance of milestones and the ways we celebrate them is more for the parents than for the child. These are some of my random thoughts about this.
While Jordan is progressing through her physical milestones at a delayed rate, she seems to be accomplishing things that we didn't know when to expect to see from her. For example, last week during dinner while she was in her portacrib, she stood up and started walking!! Derrick and I were so excited!! We grabbed the camera and took video and pictures! We took her in her bedroom and had her "perform" her new skill for us over and over and over. Even when it was obvious to us that she wanted to be done, we kept encouraging her to walk more and more! Eventually, she wouldn't even let us stand her up and she just kept flopping to the ground and crawling away. We were so thrilled at what she had just accomplished!!!
At 22 months, we have waited a LONG time to see Jordan balance on her own and take those first steps! It was so amazing and exciting to see her accomplish that milestone! However, later when I thought about the fact that many children are doing that same thing at 1/2 her age, I wonder if I am doing everything I can to help her accomplish these things quicker, faster, sooner?? I see and hear from friends about their children who are similar in age to Jordan and what they are doing and I sometimes feel like a failure. I know it's not my fault that Jordan can't do these things, but I'm just not quite sure where and how she fits in. I wonder if I should be pushing for additional therapy for her, or early preschool enrollment, or a different therapist?? Is there anything I am missing and not doing for her??
I receive e-mails from a parenting website that discuss milestones for your child at their appropriate ages. I love reading them for Conner to see what things he should be doing and to give me ideas of creative play and activities. However, I no longer can even read the ones for Jordan. It crushes me to see what my 22 month old should be doing! I feel as though I am reading about someone else's child because mine is no where near doing any of those things and I can't even incorporate the suggestions into her life.
Last night my friend Stacey, who is an awesome photographer (http://www.staceyclackphotography.com/), posted some pics she took of our friend's daughter for her first birthday eating and sitting in her cake!! They were beautiful pics that will leave a lasting memory for them for years! However, as much as I was smiling and laughing while looking at the pics, I started crying because Jordan didn't get to experience anything like this and most likely never will. For Jordan's first birthday she was eating thickened pediasure and I used some food coloring to make it pink and gave her a bowl to make a mess, but there was no cake. I guess I just look at the first birthday as the one where you give your child some brightly frosted cake to make a mess and take lots of pics. We have some pics, but they just seem less celebratory to me. And to intensify this for me, Jordan will be turning 2 in less that 2 months and she is unable to have anything by mouth so I am left feeling empty inside wondering how to celebrate this milestone.
Don't get me wrong, I love my daughter intensely and wouldn't change anything about her! I have learned more from her and through the experiences I have had with her than I could have ever imagined! However, when faced with celebrations and milestones, I am sometimes unsure how to process it all. I don't know that it takes anything away from her, but it leaves me feeling empty inside when I can't do the things with her that I have done with my other children and want to do.
I am having to learn to let go.
It's not easy to put aside the hopes and dreams and desires I have for her and just let her be who God created her to be. It's not easy to put aside the developmental milestones and accomplishments and trust that she will accomplish them in her own time. It's not easy to put aside the traditions of our family and find new ways to celebrate. It's not easy to be the parent of a special needs child.
Wednesday, April 15, 2009
Sunday, April 5, 2009
Recovering from being sick AGAIN!!!
Jordan was sick again about 2 weeks ago. This time it started with her just not digesting her food quickly. Instead of being ready to eat after 3 hours, it took her 5-6 hours to empty her stomach. That turned into cold-like symptoms, diarrhea, and lots of gagging and spitting up. The nurse had me drop the Boost 1.5 and dilute the Pediasure with Pedialite giving her less quantity at each feeding. We also started her on a feeding pump to deliver the food at a slower rate making it less likely to cause her stomach to get upset. We were also able to use the pump to deliver food throughout the night without me having to get up for night feedings. This illness eventually ended up with a pneumonia diagnosis based on an x-ray.
This worked it's way through our family as Conner, then Derrick, then I all got sick. We are now all feeling better and glad to have that behind us!
I was at first unsure what to think about the feeding pump. It seemed like we were going backwards with things. I have since come to see what a wonderful tool this is! In the past, it always took us quite a while to work Jordan back to normal feedings when she was sick. This meant a severe drop in nutrition and hydration for a long time (usually at least 1 1/2 -2 weeks) and often weight loss. With the pump we had Jordan taking much more food during the illness and back to non-diluted food within a week and few days later, back to the full quantity. We are still using it to deliver the food over a 1/2 hr but I will work on returning to bolus feedings this week. It will be nice to have on hand in case she gets sick again.
We had Jordan weighed just this past Wednesday and she was 19 lbs 13 oz! That's almost 20 pounds!! We are looking at moving her into a forward facing car seat probably within the next month. Since she will be 2 in June, that's a HUGE accomplishment for her!!
This worked it's way through our family as Conner, then Derrick, then I all got sick. We are now all feeling better and glad to have that behind us!
I was at first unsure what to think about the feeding pump. It seemed like we were going backwards with things. I have since come to see what a wonderful tool this is! In the past, it always took us quite a while to work Jordan back to normal feedings when she was sick. This meant a severe drop in nutrition and hydration for a long time (usually at least 1 1/2 -2 weeks) and often weight loss. With the pump we had Jordan taking much more food during the illness and back to non-diluted food within a week and few days later, back to the full quantity. We are still using it to deliver the food over a 1/2 hr but I will work on returning to bolus feedings this week. It will be nice to have on hand in case she gets sick again.
We had Jordan weighed just this past Wednesday and she was 19 lbs 13 oz! That's almost 20 pounds!! We are looking at moving her into a forward facing car seat probably within the next month. Since she will be 2 in June, that's a HUGE accomplishment for her!!
Thursday, February 19, 2009
First Steps!!!!!
Jordan took her first steps a few nights ago!! I was sitting on the floor playing with her and she pulled up to standing on the couch - I held my hands out to her and she took 2 exciting and quick steps to me!! I was thrilled and amazed!!! I ran upstairs and grabbed the camera and my videographer (Derrick) and we got some footage of her doing it again! I am going to try to edit it down and load it soon (it's 2 1/2 minutes and she walks in the first 30 seconds - we kept trying to get more but she wouldn't do it).
She hasn't done it again since, but it's so exciting to know that she's getting there!!! We continue to work with her and encourage her to walk behind toys and strengthen her legs and core muscles and work through the coordination and balance.
She hasn't done it again since, but it's so exciting to know that she's getting there!!! We continue to work with her and encourage her to walk behind toys and strengthen her legs and core muscles and work through the coordination and balance.
Monday, February 9, 2009
Hypoplastic Thumb...what does that mean??!!??!!
Today we went and saw Dr. Kuz at the Michigan Hand Center. Ever since Jordan was born I have been bothered by the fact that her hands seemed strange. I wasn't sure exactly what it was but last summer it was mentioned by Dr. Torielly that she had extra fat pads on the palm of her hand. It wasn't a big deal, but it still didn't explain why her thumbs looked strange. Then a few weeks ago I had someone at Ken-O-Sha look at them and she recommended we see a specialist. Last week Lynn Fagerman and Dr. Koetsier both recommended we see Dr. Kuz and he had an opening today so we got in right away.
He examined her hands and then we had some x-rays done. After reviewing them, he diagnosed her with a Hypoplastic Thumb (Type II Blauth). That basically means her thumb is small and there are minor abnormalities in the muscles within the thumb. The joint of the thumb (metacarpophalangeal joint) is unstable causing the thumb to wobble. And the web space between the thumb and index finger is narrow and tight and restricts movement.
Dr. Kuz recommended reconstructive surgery to stabilize the joint, lengthen the webbing between the index finger and thumb and transfer a muscle from the pinkie to the thumb to allow for more thumb use and to cosmetically fix the appearance of the thumb. He said that he didn't think we needed to do it now but recommended we wait until she is around 4.
He said that this condition is usually caused by a lack of cell development. It can often be associated with several syndromes, but Jordan doesn't seem to have any noticeable symptoms that would lead us to any diagnosis. This information will be useful when we meet with the geneticist, Dr. Toriello in June as an additional diagnosis that she might be able to link to something.
Although Jordan doesn't have extreme difficulties with the use of her thumb, she does favor her left hand. We don't know if she is left handed or just finds it easier to use her left hand for certain tasks due to the small thumb on her right. He recommended we continue to work with her in therapy, encouraging her to use her right thumb and continue to develop the communication between her brain and thumb.
I am glad to finally have some more answers. Although this has not been a major concern, it has bothered me since she was born and I am relieved to understand the construction of her hand and know that there is an answer and solution.
Please continue to pray for Jordan and her development. She has started entering into her toddler behavior and is having several temper tantrums a day. This morning during therapy she got frustrated and bit my collarbone and it HURT!!! I looked later and she actually broke the skin!! She is frequently throwing herself around when she doesn't get her way or what she wants. This is made more difficult by her lack of communication skills. I continue to work with her on verbal sounds and sign language, but I don't see much improvement/advancement in either. She also has a tendency to bite herself (hands) out of frustration and throw herself around when she gets mad. I try to soothe her when she gets frustrated, but it is sometimes frustrating for me as well and I need to keep my cool. I guess I am somewhat unsure if I treat her the same as a "normal" child having a temper tantrum or in a special way because of her situation. I feel like I still have sooooo much left to learn!!
He examined her hands and then we had some x-rays done. After reviewing them, he diagnosed her with a Hypoplastic Thumb (Type II Blauth). That basically means her thumb is small and there are minor abnormalities in the muscles within the thumb. The joint of the thumb (metacarpophalangeal joint) is unstable causing the thumb to wobble. And the web space between the thumb and index finger is narrow and tight and restricts movement.
Dr. Kuz recommended reconstructive surgery to stabilize the joint, lengthen the webbing between the index finger and thumb and transfer a muscle from the pinkie to the thumb to allow for more thumb use and to cosmetically fix the appearance of the thumb. He said that he didn't think we needed to do it now but recommended we wait until she is around 4.
He said that this condition is usually caused by a lack of cell development. It can often be associated with several syndromes, but Jordan doesn't seem to have any noticeable symptoms that would lead us to any diagnosis. This information will be useful when we meet with the geneticist, Dr. Toriello in June as an additional diagnosis that she might be able to link to something.
Although Jordan doesn't have extreme difficulties with the use of her thumb, she does favor her left hand. We don't know if she is left handed or just finds it easier to use her left hand for certain tasks due to the small thumb on her right. He recommended we continue to work with her in therapy, encouraging her to use her right thumb and continue to develop the communication between her brain and thumb.
I am glad to finally have some more answers. Although this has not been a major concern, it has bothered me since she was born and I am relieved to understand the construction of her hand and know that there is an answer and solution.
Please continue to pray for Jordan and her development. She has started entering into her toddler behavior and is having several temper tantrums a day. This morning during therapy she got frustrated and bit my collarbone and it HURT!!! I looked later and she actually broke the skin!! She is frequently throwing herself around when she doesn't get her way or what she wants. This is made more difficult by her lack of communication skills. I continue to work with her on verbal sounds and sign language, but I don't see much improvement/advancement in either. She also has a tendency to bite herself (hands) out of frustration and throw herself around when she gets mad. I try to soothe her when she gets frustrated, but it is sometimes frustrating for me as well and I need to keep my cool. I guess I am somewhat unsure if I treat her the same as a "normal" child having a temper tantrum or in a special way because of her situation. I feel like I still have sooooo much left to learn!!
Thursday, February 5, 2009
Jordan pulls her tube out!!!
Today was a crazy day!!!
It started this morning when Mak got up an hour early and read every clock in the house wrong and stood at the bus stop for 15 minutes before coming home and realizing that he got up so early! Then my mom came up to spend the day and I headed out with Conner to pick up Mak and the three of us had dentist appointments. On the way there, the van kinda went into neutral without actually switching gears and then went right back into drive - kinda strange, but I was just planning on telling Derrick about it later. Then after our appointment we got in the van and I couldn't get it into gear. I put it in reverse but it wouldn't go - I gave it some gas and it eventually shifted into gear but after I backed out of the parking spot and put it in drive, it wouldn't go again - it seemed to be stuck in neutral - I coasted back into our parking spot. I tried to restart the van and over and over again I tried to get it to back out but it never seemed to stay in gear. Since I was not about to get out on the roads with a car that wouldn't stay in gear, I called a friend to give us a ride home. We were almost there when I got a call from Derrick telling me that Jordan had pulled her feeding tube out and I needed to get home right away!!!
My mom was feeding Jordan and she pulled on the tube and it popped right out! It was only a few days ago that Lynn Fagerman mentioned to me that she was nearing a good time for a routine tube change - about every 3 months. My mom had her sitting on her changing table when I got home and since it had only been out for about 5 minutes, I grabbed a new one and amazingly put it right in and inflated the balloon with no problems. Jordan was fine and she now has a new tube that should last for a few more months.
I wasn't sure I could do it before, but now that I have seen it and done it, I guess I can! It's amazing what experiencing something can teach you. I was so scared, but when I pushed it in the hole and it went it, I had a HUGE sense of relief! I now have a new sense of confidence with Jordan and her tube.
However, I think my mom now has more fears and insecurities about Jordan. She was the one that was here and experienced it falling out and was not sure what to do. I hope that this experience doesn't make her uneasy about caring for Jordan - she was pretty shaken up about all of it. Please be praying for my mom to feel okay about everything - she needs to know that this is not something that happens every day and she didn't do anything wrong to cause it to happen. Please pray for to have a peace about it and a willingness to care for her again.
It started this morning when Mak got up an hour early and read every clock in the house wrong and stood at the bus stop for 15 minutes before coming home and realizing that he got up so early! Then my mom came up to spend the day and I headed out with Conner to pick up Mak and the three of us had dentist appointments. On the way there, the van kinda went into neutral without actually switching gears and then went right back into drive - kinda strange, but I was just planning on telling Derrick about it later. Then after our appointment we got in the van and I couldn't get it into gear. I put it in reverse but it wouldn't go - I gave it some gas and it eventually shifted into gear but after I backed out of the parking spot and put it in drive, it wouldn't go again - it seemed to be stuck in neutral - I coasted back into our parking spot. I tried to restart the van and over and over again I tried to get it to back out but it never seemed to stay in gear. Since I was not about to get out on the roads with a car that wouldn't stay in gear, I called a friend to give us a ride home. We were almost there when I got a call from Derrick telling me that Jordan had pulled her feeding tube out and I needed to get home right away!!!
My mom was feeding Jordan and she pulled on the tube and it popped right out! It was only a few days ago that Lynn Fagerman mentioned to me that she was nearing a good time for a routine tube change - about every 3 months. My mom had her sitting on her changing table when I got home and since it had only been out for about 5 minutes, I grabbed a new one and amazingly put it right in and inflated the balloon with no problems. Jordan was fine and she now has a new tube that should last for a few more months.
I wasn't sure I could do it before, but now that I have seen it and done it, I guess I can! It's amazing what experiencing something can teach you. I was so scared, but when I pushed it in the hole and it went it, I had a HUGE sense of relief! I now have a new sense of confidence with Jordan and her tube.
However, I think my mom now has more fears and insecurities about Jordan. She was the one that was here and experienced it falling out and was not sure what to do. I hope that this experience doesn't make her uneasy about caring for Jordan - she was pretty shaken up about all of it. Please be praying for my mom to feel okay about everything - she needs to know that this is not something that happens every day and she didn't do anything wrong to cause it to happen. Please pray for to have a peace about it and a willingness to care for her again.
Neurodevelopmental/Feeding Appt.
On Tuesday of this week, 2/3, Jordan had an appointment with Lynn Fagerman at the Gerber Center. They started by weighing and measuring her - she was 19 lbs 1 oz - a loss of 4 oz since a week ago. I was concerned because she hasn't missed any feedings and yet is losing weight. Lynn said that she isn't getting enough calories and is replacing one of her bottles of Pediasure with Boost Kids Essentials 1.5 which is supposed to have double the calories of Pediasure. We will start that as soon as it is delivered by Airway Oxygen.
Lynn was very concerned that Jordan has had no progress in her speech and is still only making the "b" sound. She was surprised that Early On has not pursued that avenue sooner, but encouraged me to work with them soon. I discussed this with my therapist on Wednesday and we are scheduled for an evaluation with a speech pathologist on 2/23.
She is glad that Jordan is going to be going back to see the geneticist in June and hopes that maybe some additional information can be gathered at that appointment.
She agreed that Jordan's hands are kinda strange and encouraged me to schedule an appointment with the hand specialist but did not think that she would need a referral. If one is needed, it would need to come from her pediatrician since she is in the feeding program.
She also recommended that while Jordan is being seen through their feeding program, she would be a good candidate for their neurodevelopmental program. She would be evaluated every 6 months by a team of people - occupational therapist, physical therapist, speech therapist, dietitian, psychologist, etc. I am hoping to get a referral from my pediatrician on Friday.
I love meeting with Lynn because I feel like I have a full overall evaluation of Jordan with all of my questions being answered. I was with her for an hour and we talked about all sorts of things relating to her feeding and development. I am concerned about her weight loss but encouraged by the things was are changing to hopefully increase her weight.
Lynn was very concerned that Jordan has had no progress in her speech and is still only making the "b" sound. She was surprised that Early On has not pursued that avenue sooner, but encouraged me to work with them soon. I discussed this with my therapist on Wednesday and we are scheduled for an evaluation with a speech pathologist on 2/23.
She is glad that Jordan is going to be going back to see the geneticist in June and hopes that maybe some additional information can be gathered at that appointment.
She agreed that Jordan's hands are kinda strange and encouraged me to schedule an appointment with the hand specialist but did not think that she would need a referral. If one is needed, it would need to come from her pediatrician since she is in the feeding program.
She also recommended that while Jordan is being seen through their feeding program, she would be a good candidate for their neurodevelopmental program. She would be evaluated every 6 months by a team of people - occupational therapist, physical therapist, speech therapist, dietitian, psychologist, etc. I am hoping to get a referral from my pediatrician on Friday.
I love meeting with Lynn because I feel like I have a full overall evaluation of Jordan with all of my questions being answered. I was with her for an hour and we talked about all sorts of things relating to her feeding and development. I am concerned about her weight loss but encouraged by the things was are changing to hopefully increase her weight.
Oral Therapy
Last Tuesday, 1/27, Jordan went in for her first oral therapy appointment at Mary Free Bed. We met with Ellen and nurse Jane and we chatted for a few minutes about her progress over the past 5 months. They weighed and measured her - 19 lbs 5 oz and 29.5 inches - a gain of 12 oz since 1/3, but still below the 3rd%.
We discussed her swallow study and she said the biggest concern was the silent aspiration - food going into her lungs without her coughing at all. She was very surprised by the results and was concerned that she has been rattly and coughing since then. Ellen insisted that she perform the next swallow study because she may have approached it differently because of her knowledge and experiences with Jordan. She recommend we perform another one in 5-6 months.
Ellen showed me several oral techniques to use to stimulate her mouth and to soften the tissue in her cheeks and lips. She gave me several sheets that described and showed pictures of the them to remind myself later. Because I have worked with Ellen before, she felt comfortable asking me to do these at home 3 times a day and discharging me from therapy. She didn't want me to use up my insurance visits if we can get Jordan eating in another 6 months or so.
Since then I have attempted at least 2-3 times a day to work with Jordan but she refuses to allow me to stick my hands anywhere near her mouth or face. If I convince her to let me get my finger in her mouth, she turns her head away or tries to bite me (successfully several times)!! The external massages I am only able to do for a brief time if she has a pacifier in her mouth.
I am getting frustrated because I feel like I am unable to do anything to progress her forward toward eating again. I am hopeful that if I continue to work with her without pushing too hard, eventually she will let me work with her. Otherwise, we may end up having to return to Mary Free Bed for therapy before long.
We discussed her swallow study and she said the biggest concern was the silent aspiration - food going into her lungs without her coughing at all. She was very surprised by the results and was concerned that she has been rattly and coughing since then. Ellen insisted that she perform the next swallow study because she may have approached it differently because of her knowledge and experiences with Jordan. She recommend we perform another one in 5-6 months.
Ellen showed me several oral techniques to use to stimulate her mouth and to soften the tissue in her cheeks and lips. She gave me several sheets that described and showed pictures of the them to remind myself later. Because I have worked with Ellen before, she felt comfortable asking me to do these at home 3 times a day and discharging me from therapy. She didn't want me to use up my insurance visits if we can get Jordan eating in another 6 months or so.
Since then I have attempted at least 2-3 times a day to work with Jordan but she refuses to allow me to stick my hands anywhere near her mouth or face. If I convince her to let me get my finger in her mouth, she turns her head away or tries to bite me (successfully several times)!! The external massages I am only able to do for a brief time if she has a pacifier in her mouth.
I am getting frustrated because I feel like I am unable to do anything to progress her forward toward eating again. I am hopeful that if I continue to work with her without pushing too hard, eventually she will let me work with her. Otherwise, we may end up having to return to Mary Free Bed for therapy before long.
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