Yesterday, I received a call from Jordan's dietitian at the Gerber Center. After meeting with the neurodevelopmental specialist last week and mentioning that I would like to consider using a different formula than the magic mixture of 3 different ones that we have been using for 2 1/2 years. This has been a process I have been working on since last spring/summer.
Jordan's food mixture is made up of Pediasure, Pediasure with Fiber, and Boost 1.5. We get the Pediasure's through WIC and have to purchase them at the store (usually Meijer) and we get the Boost through Airway Oxygen. The problem with the Pediasure is that there have been many times I cannot find vanilla Pediasure on the shelves. I have actually driven to 3 different stores in one day in order to get what I needed to fulfill my WIC benefits before they ran out for the month. We even tried to order it through the pharmacy and through the grocery manager and both of those efforts failed.
I am excited mostly because it has bothered me for over a year that the only nutrition Jordan receives is from a bottle of artificially prepared liquid. The ingredients on the Pediasure are water, sugar (sucrose), corn maltodextrin, milk protein concentrate, high oleic safflower oil, soy oil, whey protein concentrate, medium chain triglycerides, etc. The ingredients on the Boost are water, maltodextrin, soybean oil, soybean caseinate (from milk), sugar, high oleic sunflower oil, whey protein concentrate, medium chain triglycerides, calcium caseinate, etc. I hate that during the first 3 years of Jordan's life, when nutrition is vital for brain development, she has been only getting this mixture of ingredients. I understand that it is considered "complete nutrition", however, in my opinion, it is not healthy.
The new food is called Compleat Pediatric and is manufactured by Nestle'. It is a blenderized tube feeding formula made from water, cranberry juice cocktail (from concentrate), corn syrup solids, chicken puree with natural flavors (water, dehydrated chicken meat), pea puree (water, pea powder), green bean puree (water, green bean powder), sodium caseinate (milk), peach puree, etc. I just feel so much better about giving her food that is closer to what we eat. I know that there are still artificial and manufactured ingredients in this formula, but it is so much closer to what she would be eating if she could.
The other nice thing is that we order it through the pharmacy at Meijer or Family Fare or other grocery pharmacies that accept WIC. This means that I call in and order it and a few days later, I go to the pharmacy and pick it up! LOVE IT!!!
We get her first case tomorrow and start the transition on Friday. It will take 25 days. Every 5 days we increase the amount of Compleat and decrease the amount of her current mixture. We also will be able to reduce the amount of water we give her following her feeding because we will be increasing the total amount of her feedings in order to match the calories/oz that she loses from the Boost 1.5.
Wednesday, March 23, 2011
A Week = 7 Days
Yes, I realize that an entire week has passed since I have posted anything during this period in which I committed to blogging daily!!! I will try to make up for it with multiple posts over the next few days :)
Wednesday, March 16, 2011
Nothing...
So, I was thinking that since we stayed home today and I wouldn't have much to report on, it would be a great day for posting some pics and videos. Unfortunately, there was a ton of stuff to do around the house after a crazy weekend followed by 2 crazy days!! And then, my wonderful husband took the little kids to church tonight so I could work on the taxes...it is only 4 weeks away!
Therefore, I have nothing major to blog about and I am too exhausted to stay up loading pics/videos...maybe tomorrow...
Therefore, I have nothing major to blog about and I am too exhausted to stay up loading pics/videos...maybe tomorrow...
Tuesday, March 15, 2011
Another Crazy Day!!!!!
Today we started off with Jordan again joining the ECSE (Early Childhood Special Education) 3 year-old class for Speech/OT group. She did great! She again had difficulty sitting still and was a talker today and kept pointing to her sleeve and saying "shirt." While she was in group, I filled out a Sensory Profile and started to fill out the forms for her upcoming IEP.
Jordan's feeding therapy with Ellen was canceled because she wasn't in today, but they ended up having an opening with Jenny (a therapist that worked with her a while back - check out the pic in the sidebar area). We headed over there and tried a little feeding bag that I found mixed in with baby feeding stuff. It has a small mesh bag with a snap cover and a handle to hold. I wanted to see if they thought it would be okay to use it for Jordan since the holes were larger than the bag we are currently using. Jenny tried it out and Jordan did very well!! She loved the banana and enjoyed the hot dog. She wasn't too excited about the Doritos or the sour gummy worm. She liked the goldfish crackers but it was too pasty and she definitely had crud in the back of her throat that didn't clear until we gave her some applesauce. Overall, it seems like a great alternative to allow Jordan more independence in her feeding. She will still have to be closely monitored and we have to remind her to take the bag out and swallow after a few seconds. We found that she loved the foods that gave her the most through the bag and disliked the ones that only gave her flavors and a small amount. I am excited to see how this works for her!!!
After that, I had 2 appointments for Mak. I came home and threw together some dinner and had a few bites to eat and then headed out with my friend Terri to attend a group discussing healthy eating for our children. I tried many of these things with our family last summer and they are great...except that they cost a lot of $$$! I did get some ideas of things to consider and even found a website with information on making homemade formula to with whole, natural foods that I could possibly use for Jordan. I have realized over the past year how much I hate having her get nothing but chemically processed fake foods. I'm not sure if this is realistic, but it is something that I want to at least think about.
I am now exhausted from 2 crazy days of appointments...and looking forward to the next 2 days that I am home with no appointments and no van to go anywhere even if I want to! It looks like I will finally have a few days to focus on doing some school with Conner (and Jordan), cleaning the house (and letting them help), and enjoying my kids and being their mom!!!
Jordan's feeding therapy with Ellen was canceled because she wasn't in today, but they ended up having an opening with Jenny (a therapist that worked with her a while back - check out the pic in the sidebar area). We headed over there and tried a little feeding bag that I found mixed in with baby feeding stuff. It has a small mesh bag with a snap cover and a handle to hold. I wanted to see if they thought it would be okay to use it for Jordan since the holes were larger than the bag we are currently using. Jenny tried it out and Jordan did very well!! She loved the banana and enjoyed the hot dog. She wasn't too excited about the Doritos or the sour gummy worm. She liked the goldfish crackers but it was too pasty and she definitely had crud in the back of her throat that didn't clear until we gave her some applesauce. Overall, it seems like a great alternative to allow Jordan more independence in her feeding. She will still have to be closely monitored and we have to remind her to take the bag out and swallow after a few seconds. We found that she loved the foods that gave her the most through the bag and disliked the ones that only gave her flavors and a small amount. I am excited to see how this works for her!!!
After that, I had 2 appointments for Mak. I came home and threw together some dinner and had a few bites to eat and then headed out with my friend Terri to attend a group discussing healthy eating for our children. I tried many of these things with our family last summer and they are great...except that they cost a lot of $$$! I did get some ideas of things to consider and even found a website with information on making homemade formula to with whole, natural foods that I could possibly use for Jordan. I have realized over the past year how much I hate having her get nothing but chemically processed fake foods. I'm not sure if this is realistic, but it is something that I want to at least think about.
I am now exhausted from 2 crazy days of appointments...and looking forward to the next 2 days that I am home with no appointments and no van to go anywhere even if I want to! It looks like I will finally have a few days to focus on doing some school with Conner (and Jordan), cleaning the house (and letting them help), and enjoying my kids and being their mom!!!
Monday, March 14, 2011
Summary of Today's Evaluation
Today Jordan met with the Psychologist and Neurodevelopmental specialist and was evaluated on her development. She weighed in at 26.5 lbs and was 35.5 inches.
During her psychological evaluation she did quite well and was found to be somewhere between what is considered normal and what is labeled low for intelligence and performance of verbal and nonverbal skills. He believes that she could make cognitive progress as she continues to improve in her verbal abilities. He noticed some anxiety that manifested itself with her perseverating* at times through twirling her hair or her hands on the table.
*Perseverating means they do certain actions over and over again, like repeating a phrase, shutting a door, twiddling fingers, lining up toys, rubbing hands together, spinning objects, etc.
Her neurodevelopmental eval went well and she encouraged us to continue what we are doing and focus on Jordan's speech therapy and oral motor/feeding therapy as her gross motor and fine motor skills seem to be developing quite well. When I questioned about her high sensory needs she recommended we have the school perform a sensory profile and discuss some sensory planning to help her function at a more calm, stable level.
This system was completely different than what has been done in the past. We used to have a 4 hour appointment where we would rotate meeting with an OT, PT, SLP, nutritionist, social worker, as well as the 2 we saw today. I don't believe that the evaluation is as thorough and I have always felt that the Neurodevelopmental specialist doesn't always give straight answers to my questions. I am somewhat disappointed that we were unable to see the SLP in particular because that is the area of greatest concern for Jordan.
Now I am preparing for tomorrow's appointments...Jordan's feeding therapy was canceled so she only has the group OT/speech tomorrow at school. I hope to have some video of her to post soon!!
During her psychological evaluation she did quite well and was found to be somewhere between what is considered normal and what is labeled low for intelligence and performance of verbal and nonverbal skills. He believes that she could make cognitive progress as she continues to improve in her verbal abilities. He noticed some anxiety that manifested itself with her perseverating* at times through twirling her hair or her hands on the table.
*Perseverating means they do certain actions over and over again, like repeating a phrase, shutting a door, twiddling fingers, lining up toys, rubbing hands together, spinning objects, etc.
Her neurodevelopmental eval went well and she encouraged us to continue what we are doing and focus on Jordan's speech therapy and oral motor/feeding therapy as her gross motor and fine motor skills seem to be developing quite well. When I questioned about her high sensory needs she recommended we have the school perform a sensory profile and discuss some sensory planning to help her function at a more calm, stable level.
This system was completely different than what has been done in the past. We used to have a 4 hour appointment where we would rotate meeting with an OT, PT, SLP, nutritionist, social worker, as well as the 2 we saw today. I don't believe that the evaluation is as thorough and I have always felt that the Neurodevelopmental specialist doesn't always give straight answers to my questions. I am somewhat disappointed that we were unable to see the SLP in particular because that is the area of greatest concern for Jordan.
Now I am preparing for tomorrow's appointments...Jordan's feeding therapy was canceled so she only has the group OT/speech tomorrow at school. I hope to have some video of her to post soon!!
Sunday, March 13, 2011
Eval tomorrow...not sure what to expect...
Well, once again I failed to post yesterday...can I blame it on the fact that I spent the morning facing the crazies at Meijer and then came home to clean the house and make a HUGE pot of soup and 21 sandwiches for today's lunch and then had my home invaded by 10 wonderful family members?!?!? Well, it was quite a crazy day and I didn't even think about missing it until I was at church this morning. It was great to have so many people here this weekend, but I am now looking forward to what the week has to hold.
Tomorrow Jordan has an evaluation with her neurodevelopmental specialist, Dr. Burdo-Hartman and the psychologist, Dr. Pasternyk. In the past few years, this has been a HUGE eval by several different therapists and specialists, but they have altered things and now I'm not so sure what to expect. Tonight Derrick and I put together a list of questions and things that we are curious about and I am looking forward to their views. Plus, it will give me something fun to blog about tomorrow!!
Well, since we lost an hour last night with the time change, and my fabulous nieces dragged me to Wendy's at midnight to get french fries...after eating a ton of red vines and dark chocolate raisinets, I am now totally and completely exhausted!!! Oh yeah, and I have to leave the house with the 2 little ones tomorrow by about 7am!!!!! Therefore, I am going to bed!!!
Tomorrow Jordan has an evaluation with her neurodevelopmental specialist, Dr. Burdo-Hartman and the psychologist, Dr. Pasternyk. In the past few years, this has been a HUGE eval by several different therapists and specialists, but they have altered things and now I'm not so sure what to expect. Tonight Derrick and I put together a list of questions and things that we are curious about and I am looking forward to their views. Plus, it will give me something fun to blog about tomorrow!!
Well, since we lost an hour last night with the time change, and my fabulous nieces dragged me to Wendy's at midnight to get french fries...after eating a ton of red vines and dark chocolate raisinets, I am now totally and completely exhausted!!! Oh yeah, and I have to leave the house with the 2 little ones tomorrow by about 7am!!!!! Therefore, I am going to bed!!!
Friday, March 11, 2011
Failed already!!!
Well, the second day of lent came and went without me posting anything...FAIL!!! This is going to be much harder than I imagined! I suppose it was because it was a pretty boring day...nothing to report on. I know that I have lots to catch up on, but for some reason, I just never did.
This morning Jordan had speech at Century Park with her school speech path, JoAnne Hurley. JoAnne also worked with Conner a few years ago and is great! This year started off a little rough, but I think Jordan was just so difficult to work with that it took a while before Jo figured her out. Jordan now loves to go see Jo and there are no more tantrums or problems. Although Jordan doesn't always go along with Jo's plan, most of the time she is cooperative and participates. Today I asked about the communication device that Jordan will be trying out for the next few months - Jo was going to look into that and hopefully we will have that soon!
As I write this, Jordan is bringing every pair of shoes, boots, etc from her room and piling them next to me! Do I have a fashion queen on my hands?!?!?! maybe...
This morning Jordan had speech at Century Park with her school speech path, JoAnne Hurley. JoAnne also worked with Conner a few years ago and is great! This year started off a little rough, but I think Jordan was just so difficult to work with that it took a while before Jo figured her out. Jordan now loves to go see Jo and there are no more tantrums or problems. Although Jordan doesn't always go along with Jo's plan, most of the time she is cooperative and participates. Today I asked about the communication device that Jordan will be trying out for the next few months - Jo was going to look into that and hopefully we will have that soon!
As I write this, Jordan is bringing every pair of shoes, boots, etc from her room and piling them next to me! Do I have a fashion queen on my hands?!?!?! maybe...
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