Jordan's MRI

Jordan and I arrived at Spectrum for her MRI at noon.

Jordan's wrist band

Her nurse, Sherri, took us back to the pediatric sedation room and basically explained what would happen over the course of the next few hours. A few minutes later, Dr. Kim Winterhalter, the Dr. (who I thought was a nurse) I had spoken on the phone with a few days earlier, came in. She talked with me for a few minutes about Jordan and her referral from Dr. VanDyke and her feeding issues. She wanted to listen to Jordan’s chest to hear her rattle sound. She was concerned that the traditional method of oral sedation might not be strong enough to keep her asleep if she started coughing. She was also concerned to go with the IV method because it would put her in a deeper sleep and might be so deep that she wouldn’t cough if she needed to and would be more likely to aspirate. After processing things, she decided to start with a medicine that would reduce her secretions/mucus and hopefully reduce the rattle in her chest. At 12:55 they gave her Robinul and waited about 20 minutes.

Playing while waiting for the medicine to clear her chest.

She listened again to her chest and decided it sounded better and they would move forward with the oral sedation. At 1:25 they gave her Chloral. Jordan fell asleep within a few minutes because it was naptime anyway. They waited 20 minutes and checked on her and she was sound asleep in my arms.

Sweet Dreams!!

I laid her in the bed they use to transport her to the room for the MRI and she woke up. Instead of falling back to sleep, she started kicking her legs and looking all around the room. Sherri left and gave her a few minutes to settle down and fall back asleep, but she didn’t. I tried to pick her back up and get her back to sleep, but she decided to give her another small dose of Chloral at 1:55. She fell sound asleep and this time Sherri was able to get the actual table used in the MRI and bring it to the room and I placed Jordan directly on that table and Sherri put in ear plugs and they took her away at 2:15.

On the MRI table w/ earplugs in

Sherri returned with a sleepy Jordan in her arms at 3 and I took her and held her for a little while.

Sleepy Jordan - time to wake up!

I changed her diaper and she woke up briefly a few times, but let her sleep until 4. At that point, we got her awake and decided to try some liquids. I put her in her stroller and gave her 1 oz thickened apple juice by spoon. She seemed to be quite fussy but I figured she was still very sleepy and very hungry. I waited a few minutes and then gave her a bottle of thickened Pediasure – she took 6 oz and wanted more! I decided that was enough for this feeding and I would just continue to feed her every 2 hours until bedtime. Jordan was discharged at 5 and we returned home. It was a very long day but I look forward to hearing what Dr. Burdo-Hartman has to say about it next week!

Jordan's MRI Tomorrow

Jordan will be going in for an MRI of her brain tomorrow. This was recommended by Dr. VanDyke, the pediatric neurologist and ordered by her pediatrician, Dr. Koetsier. She will be unable to have anything to eat or drink after 7:30 am. We will need to be at the hospital at noon for a 1:30 appointment. She will be sedated for the procedure. Derrick will be unable to be there due to limited vacation time and because he will be attending her evaluation next Thursday with Dr. Burdo-Hartman and her team as well as needing to have surgery on his other foot before the end of the year (he had the first one done in January). Please pray that Jordan is okay without eating for that length of time - dehydration is our biggest concern for her on a daily basis and removing all liquids for 9 hrs or so increases her risk. Also pray for the radiologist and nurses that will be performing the procedure - that everything goes smoothly and they see what they want to. Also pray for our family as we will all be doing different things - Derrick will be at work, I will be with Jordan, Mak will be doing some chores around the house to get ready to go camping for the weekend, and Conner will be at our house with a babysitter. It is also Derrick's Birthday and hopefully we will be able to celebrate it at some point later in the day!

Today's MFB Therapy

At today’s MFB therapy, Ellen and Jane were both encouraged since Jordan took 24 ½ oz of Pediasure yesterday. We began feeding her by spoon and she did well taking a few spoons of Pediasure and then a spoon of apple juice. After about 1-oz pediasure, she seemed to tire of spoon-feeding and she started sucking on her fingers and didn’t have any more interest in the food. We brought out her bottle and she drank about 2 oz from it before she got tired and didn’t want any more. More than anything we discovered that Jordan knows when she is hungry but may not be able to determine when she is full. She tires of eating before she is full and therefore may not understand a "full" feeling. Ellen encouraged me to be careful not to go over 5-6 oz total per meal with her for now until she is regularly eating that much.

Ellen also worked with her on some tongue therapy – during her spoon-feeding she noticed that Jordan’s tongue was very active on the left side of her mouth but she never used it on the right side. Ellen used her finger to try to encourage her to move her tongue to the right side. Jordan thought that it was fun to play with Ellen like that and eventually she did move her tongue to the right side a couple of times. Ellen said that right now we need to focus more on nutrition and we can do therapy only when she’s getting her nutrition.

As far as the MRI tomorrow, Jane said that if I wake Jordan up once the night before for a feeding and once the night after for a feeding, that should replace 2 of the 3 feedings she will miss and she should be okay. She also said that if on Friday, I have some concerns of dehydration, or she doesn’t start eating her normal quantity, I may want to call my pediatrician and they may have me go into the hospital to have an IV of fluids. They said that the radiologist is required to report on the MRI within 24 hours and that even if the report is not given to Dr. Burdo-Hartman before Jordan’s appt next week, she should be able to bring it up on their computer system and read it.

Yesterday's Mary Free Bed Therapy

Today’s therapy at MFB started with Ellen being very concerned with the way Jordan sounded. She has been very wet and rattly sounding for a week or so. I asked about Jordan’s MRI and her not being able to have anything to eat/drink after 7:30 am on Thursday. Nurse Jane was concerned that she may dehydrate if not allowed to have an iv and suggested that I call the nurses line listed on the back of the brochure. Ellen and Jayne talked while Nurse Jane listened to her lungs/airway. Then they came over and had an informational discussion about feeding tubes with me. They explained that they don't really have many more ideas of what to do to safely feed Jordan. Since her appt with Dr. Burdo-Hartman is next week, they hope to avoid her having to go through all of these same steps through their program so they will be providing Dr. Burdo-Hartman with updated progress information explaining all of the different things they have tried and the ways they haven’t worked. They explained that an NG-tube would go through her nose and that it would be in for at least 2 months. It would make it even more difficult for her to swallow but that if B-H feels that they can get her eating safely in that time frame, she might go with it because it is less invasive. If they feel she needs a long-term solution, they may go with a G-tube which would require surgery and would be in for at least 6 months. They will provide all updated info to Dr. B-H before next week’s appointment so that she will know where Jordan has been for the past few months.

Jayne, the dietitian explained that after we see Dr. B-H, we will be served through the dietitian in their program so she would no longer attend Jordan’s therapy sessions.

Ellen decided to go back to spoon-feeding. We used a 1 oz medicine cup with honey/pudding thick Pediasure and within a few spoons, Jordan was sounding wetter than before. Wondering if the cause was a reaction to dairy, Ellen thickened some apple juice and we used a spoon of apple juice after a few spoons of Pediasure. Jordan loved the taste of the apple juice and was sucking it all out of her mouth. She was VERY hungry and wanted sooo badly to eat, but wasn’t swallowing well so we had to go very slowly. After about 2 oz of Pediasure by spoon we switched over to the bottle. Ellen decided to take out the valve system of the Dr. Brown’s bottle because it seemed to be getting in the way of the thick pediasure getting into the nipple. This was causing much more work for Jordan to eat. Jordan took just under 2 oz fairly quickly and would have had more. Ellen recommended that I follow this same procedure for 5-6 feedings/day – start w/ spoon feeding Pediasure and apple juice and then switch over to a bottle.

We have therapy again tomorrow so we will see if the works better for the next day...

Early On / Ken-O-Sha Therapy

On Friday, Betsy came over for Jordan's therapy. She was happy with the progress since we last saw her in the end of May. Jordan is much more stable while sitting and is even trying to reach more for things. She is also learning to move her legs around and twist to reach, sometimes resulting in her turning herself around! Although I wouldn't quite call her mobile, she's definitely on her way!! Last week she also started to bear weight on her legs for a minute or so at a time. She will even hold onto (with a death grip so she doesn't fall) an object and stand there on her own for a short time! Her ankles, knees, and hips are all locked so it's not the best "standing" technique - but it's a step in the right direction! The most interesting thing Betsy observed is that it is common for kids to stand on their toes, but Jordan stands on her right heel. We will have to see what develops from this. I have some pics from her therapy on Friday - I will post them soon!

Pictures and the Doctor

This morning we met my friend Stacey at Hagar Park in Jenison to get some pics of Jordan. We were both afraid it was going to be COLD but because the sun was out, it was about 65 degrees. Although I wanted pics of her in a cute sundress, we started in jeans and a hoodie - eventually she ended up in her cute little dress. Jordan was more interested in whatever she was sitting in (sand, wood, chips, grass, flowers) and wasn't so much in the mood for smiling, but I think Stacey got a few good shots. She should have them posted on her webpage soon: www.staceyclackphotography.blogspot.com If you look under May 5, you will see the ones she took of Conner a while back. She is awesome!!!

After that, we went to the Dr. for her 1-year check up. Dr. Koetsier basically told me that even though I want answers about what to expect, there is no guarantee with anything. We are on a journey with Jordan and we will continue to have evaluations, tests, and therapy and we might find out more, but there are no guaranteed answers. He said that as parents we will want to do everything we can for her but sometimes it is best to not do anything. She might reach a point where therapy is no longer going to be beneficial to her and there are no more tests that can be done and we need to just enjoy her for who she is. As for now, he ordered the MRI and she is scheduled for next Thursday 6/26 at 1:30pm. I am very interested to see what this might show...

Today's MFB Therapy

Today at Jordan’s therapy at MFB, Deb started her with a bottle of Pediasure (8oz w/ 3 packets of Simply Thick-Honey) through a stage 3 nipple. She drank pretty well and showed signs of wetness a couple of times but never coughed. She took around 4 oz in 20 minutes with some breaks in between. We then put her in the highchair and let her play with some teething toys encouraging her to stick out her tongue and move it from side to side. Deb encouraged me to do this at home with her and told me if I have any concerns to call Ellen.

It was a very different therapy because we had just been their yesterday and Jordan was still doing well with the bottle we started then. Hopefully she will continue to drink well through next week's appt. Otherwise, I will have to go back to spoon feeding her.

MFB Therapy

Today I was unsure what to expect at therapy. Jordan had a great week...until yesterday. She drank around 20 oz per day of thickened Pediasure and seemed to be peeing a little bit more. However, yesterday she started sounding very wet and gurgly when drinking and coughing lots during and following her bottles. Well, she weighed in at 14lbs. 14 oz. which is a good gain! However trying to figure out how and what to feed that little girl was a challenge!

Ellen and Deb worked together and tried the thickness we have been using with the Y-cut nipple (what we have been using) and she again, sounded very wet with it. They thickened the Pediasure even more (it was VERY thick!!) and used the Y-cut nipple - it was so thick that she was no longer wet sounding but it required way too much effort on Jordan's part and she fatigued very quickly (only after a few sips) and didn't want anymore. Finally, we tried going back to the original thickness (somewhere between honey and pudding) and used a stage 3 nipple. Ellen also let her suck on it like a regular bottle taking a break after a minute or so to give her a chance to clear anything. This seemed to work for her. If she has any problems after trying this, I will just spoon feed her the Pediasure.

Jane the nutritionist and Jane the dietitian both decided that in order to give Jordan the nutrition and hydration her body needs we need to stop thickening with pudding/applesauce/rice cereal. They want her to get more Pediasure and less other stuff. They want me to start using "Simply Thick" a tasteless, calorie-free thickening gel. Unfortunately the stuff costs a ton!!! A case of 100 packets is available at Gordan Foods for approx $60. Although it seems like this would last a while, Jordan needs 3 packets for every 8 oz of Pediasure and she should be getting 3 bottles of Pediasure a day. This comes to about $5.50 a day or $165 per month!! Although it's not quite as expensive as the Pediasure, it's definitely a cost that we weren't planning on. I will check to see if WIC will cover this also.

We have another appointment with Ellen and Deb tomorrow morning so it will give us a chance to see what else we might need to do.

Happy Birthday Jordan!!!

Jordan celebrated her 1st Birthday on Thursday, June 12th!!!
We spent the morning at a playdate with our MOPS group. She had lots of fun playing with her "boyfriend" Dylan! He's a hunk of a guy who is 2 1/2 months younger than her - although you would never know by looking at him!!
After an afternoon nap, Grandma and Grandpa came up from Kalamazoo to celebrate! Jordan has lots of new toys to play with and Conner loves them too! She enjoyed a bowl of pink thickened Pediasure showing off her eating skills!!! We had a great day celebrating Jordan!

Jordan is Drinking!!!

Today has been a very good day for Jordan's drinking. Throughout the day she had 5 bottles of 4 oz of Pediasure thickened with yogurt, pudding, and cereal to make it pudding consistency. All but 1 of those bottles she finished in about 5 minutes by using the technique of giving her 1 sip at a time! The one she didn't finish was right before lunch so I thickened it with some barley cereal and spoon fed her the rest of it. That's 20 oz of thickened Pediasure full of nutrition for my baby girl!!

I am now hoping for a good night's sleep without worrying about Jordan so much!!!

...of course, we need to figure out how to keep Conner asleep all night because I spent 1 1/2 hours last night trying to get him to stay in bed between 2-3:30 am!!! Funny thing is that I heard his little footsteps but thought he went back to bed until Derrick found him on the living room couch this morning!! This happened a few nights ago also so it seems to be a new trend...

MFB Therapy

I was very unsure of what today's therapy would bring since Jordan has gotten such a low amount of fluids for the past several days (less than 10oz per day). Surprisingly she actually gained a little weight - she was up to 14lb 8 oz. There was quite a bit of concern with the possibility of dehydration and lack of nutrition.

Ellen tried a new (but actually old) sippy cup with honey thick Pediasure. Jordan sounded very wet and gurgley. She thickened it to a pudding consistency and she did okay with it when given just a sip at a time.

We then worked on a bottle. Ellen used a Dr. Brown's bottle with a Y-cut nipple and pudding thick Pediasure. Again, we only let Jordan take one sip at a time. She actually did quite well with it and didn't sound too wet. After she started refusing the bottle we tried spoon feeding her and she took a few spoonfuls before she didn't want anymore. Over a period of about 30 minutes she took almost 3 oz!

The nutritionist and dietitian agreed that Jordan needs to stick to a diet of Pediasure thickened to the appropriate consistency with pudding, yogurt, and cereal. I will drop her fruit and veggie purees for now so that we ensure she is getting the most possible nutrition, calories, and liquids in as little amount of food as possible.

They feel that Jordan has started on a downward spiral - she is getting less nutrition and her energy level is weakening and so she has less energy to put towards eating, thus giving her less nutrition. Her therapy has now been increased to 2x/wk and they will monitor her closely. They want to get her in to see the specialist before July 3, but she is out of town for 2 weeks. If necessary, they may have her see a different specialist in the same program at DeVos Children's Hospital.

As I was leaving today I asked Ellen about the feeding tube and she said she was pretty confident Jordan would need one to get her the nutrition she needs. Currently her therapy consists of finding the safest way to get her as much nutrition as possible and they can't even work with her on building the skills she needs to learn.

The past few days have been quite stressful and somewhat overwhelming for me. I am constantly concerned about what Jordan is consuming and how much and often she has wet diapers. I know that Jordan is being monitored weekly but a day seems like forever when she's not drinking and not peeing! Please pray that Jordan receives the nutrition she needs to stay healthy and for my stress level through all of this. I don't feel like I can keep up with all of the day-to-day work of being a wife and mom to 3 kids. Also pray for Mak and Conner in all of this - I don't want them to feel unimportant because of all we are doing for and with Jordan.

Thank you all for supporting us through this journey!

Feeding Time

Well, over the past several days, I have been working on feeding Jordan according to the therapist's instructions. It's a lot of work!! I have used 2 separate containers to mix approx. 8 oz of her Pediasure with various thickeners (pudding, rice cereal, applesauce, yogurt) and then label them for the day. I was mixing it for each meal, but saw that my friend Tara Ronning had a great idea for Elliot's formula and realized it would be easier to make a bunch and pour it into the bottle/cup for each feeding. I have also thickened her stage 2 purees to approx. a pudding thickness if they are thin. Feeding her is still very time consuming and requires quite a bit of focus from me. I have realized that I don't like the open cup at all. Jordan has a tendency to lean her head forward, diving into it at the last second, and breathing in at the same time and usually ends up gulping it with a bunch of air - completely what she's not supposed to do!! I have found that although labor intensive, spoon feeding her liquids seems to be the best way to safely get them into her tummy.

I am getting more concerned about the quantity of liquids she is consuming on a daily basis. The past 2 days she has been right around 10 oz of Pediasure mixture for the entire day!! She was around 15 oz consistently for the past several weeks. This drop in quantity might be due to the fact we are now thickening it or that we switched to Pediasure. My primary concern is that she is probably borderline dehydrated most of the time. In fact, yesterday she only had to to have her diaper changed when she got up, once in the afternoon, and then again before bed. I know they wanted me to watch it closely with her and so I will see what happens today and discuss it at her therapy tomorrow.

Overall, Jordan still continues to "seem" fine. She is the happiest and most content baby EVER!!! I love to see her make small accomplishments - in the past week or so she started being able to hold a toy in one hand and pick up another in the other one. We have also worked on teaching her how to wave bye-bye. She is constantly banging 2 toys together now also. It is so much fun to work with her and see the joy it brings her to be able to do things! I am anticipating watching her continue to blossom as we move forward in her therapy.

Appointment with the Specialist at DeVos Children's Hospital

Yesterday I had a phone call from Nancy at Dr. Burdo-Hartman's office. She is the pediatric neurodevelopmental specialist at the DeVos Children's Hospital Pediatric Feeding Clinic. I had about a 20 minute phone interview and was scheduled for an evaluation appointment on July 3rd. Although it is a month away, it actually is a very good thing because she normally schedules a few months out.

At the appointment she will be evaluated by Dr. Wendy Burdo-Hartman (pediatric neurodevelopmental specialist), Dr. Pasternak (behavioral psychologist), and occupational therapist, and a nutritionist. Together they will determine what needs to be done with Jordan - therapy, additional tests, etc...

This is a very good step in determining what is going on with Jordan from all perspectives. The multidisciplinary approach will hopefully provide a stronger diagnosis and treatment program than having her evaluated by everyone separately (like KOS had done physical and neurological, but MFB is doing oral motor only). Please be in prayer about the evaluation and all Dr.'s participating in it.

Hannah is my Hero!!!

Hannah at MFB just called and told me that everything from the start has been authorized by our insurance!!! This morning she faxed the report from the neurologist and the report from the swallow study yesterday to our insurance company and told them that they needed to process it asap. She went above the person who had originally handled Jordan's case and pretty much followed up constantly to make sure they understood the severity of the situation. I am soooooo glad to have her on Jordan's team for all of this!! Thanks Hannah!!!!!

Thank you also to everyone who is praying for Jordan. I know that God is working in and through this whole situation. I know that without prayer, I would never have the energy to keep going everyday without breaking down. Although everyday is exhausting, somehow I manage to get through (sometimes I think the caffeine helps!) Please continue to pray for Jordan, our family, and the team of individuals that are working to determine what's going on and give her what she needs.

Videofluoroscopy & MFB

Yesterday we had a busy day of evaluating Jordan! We started at MFB with a weight check. Jordan was down to 14 lbs 4 oz - That's back to where she was a month ago and almost a pound down from where she was 2 weeks ago. Although it is frustrating and somewhat concerning to see her losing weight, we had to take into account the fact that we have completely changed everything about her eating in the past month. She has been weaned from breastfeeding and had to start using formula through a bottle and a Solo cup for her liquids. We have messed with the formula itself - thickening it by using yogurt and pudding - foods she wasn't used to. And introducing an additional "meal" of solids and stopping 2 milk feedings. I guess if someone messed with my "normal" I might not eat as much either! On the good side, she did grow in length a small amount showing that she's getting enough nutrition to grow!

Nurse Jane and Ellen explained that Jordan has been getting enough nutrition to either stay healthy or grow. She chose to stay healthy, which is why she is almost never sick (other than a few colds during the winter and her 2 recent ear infections). If she had chosen to grow, she most likely would have been sick quite frequently over the past year. They were both amazed that she never had bronchitis or pneumonia!

After the weight check, they confirmed that I need to switch her to Pediasure for the additional calories. Good think I stopped at Meijer last night and bought some!

Then we headed over to St. Mary's for the videofluoroscopy. We put Jordan in a little seat and strapped her in. The radiologist took his position next to the machine, and Ellen (our therapist) was ready with all of the different liquids and foods mixed with barium, and the bottles, cups, and bowls. We tried various types of thicknesses in various ways (bottle, cup, spoon) to see how she would react to it. Jordan wasn't on her best behavior but wasn't on her worst either. Ellen was recording everything so that after we were done, she burned a dvd and we headed back to MFB to review the video.

There were several things that the video showed. Jordan had penetration (where the food/liquid starts to go into the lungs but stops before it does and then continues to the stomach), aspiration (where the liquid actually goes past the flap into the lungs), and she also had a hard time managing the food (actually swallowing it all the way down - it would stop 1/2 way down and just sit there). She also had some going up into her nasal passages. Ellen wanted to evaluate the video more and will have a full report for me next week.

In the meantime, I was given some additional instructions for feeding her. I can give her a bottle of nectar thick liquid only if she is very cooperative and doesn't start getting sloppy/sounding gurgley/spitting out the bottle - I have a 5 minute timeframe on the bottle because then she tires and gets sloppy with her swallowing. For meals, I can give her a Solo cup with honey thick liquids unless she starts getting sloppy/sounding gurgley/coughing/gagging. At that point, I have to thicken the liquid to a honey/pudding thickness and feed her by spoon. I also need to thicken the liquidy stage 2 purees to a pudding thickness. She told me to observe her clinically when I am feeding her. Ellen told me that she know this is very labor intensive, but that she wants to make sure Jordan gets as much as possible without tiring or having problems swallowing which can cause serious complications.

Nurse Jane and Ellen together discussed that I need to closely monitor Jordan in the next few days for dehydration and/or bronchitis or upper respiratory issues. Ellen was going to call the pediatrician's office and inform them that if I call with any concerns in the next few days that I am not an over-reactive parent but that my concerns are legitimate since we know that she is not getting a lot of fluids and she is aspirating while drinking/eating. They also decided that they definitely want her to be evaluated by Dr. Burdo-Hartman at the DeVos Children's Hospital.

I was gone from 10-1:45 for this appointment - I was exhausted when I got home!!! I am glad we were able to see what Jordan is doing and I look forward to seeing what Ellen wants to do. She mentioned there are 2 types of feeding tubes that we may need to use to ensure Jordan gets enough nutrition and fluids. I don't necessarily want to have to go to that extent, but I just want to make sure that we do everything we can to ensure Jordan is getting everything her little body needs to stay healthy and grow!!

This information, together with the neurologist's report, I am hoping and praying will be enough to qualify Jordan for our insurance coverage. Although, we will still be following through with the Children's Special Health Care Services.

WIC

Today I went to apply for WIC. We received benefits for Conner for some basic foods - milk, eggs, cereal, juice, cheese, and cereal) and for Jordan for her Pediasure. I am glad that we will be able to have some of these basic needs provided for.

Becky Schut came along to help me and I am very thankful that she was there! Conner is such a busy guy that there was no way I could have had a conversation with them without numerous interruptions. During the exam, neither of the kids cried when they had their finger poked - that was a relief! I was somewhat concerned that Jordan lost weight for the 2nd week in a row! I know that since the last 3 weights were take at different locations on different scales, they might be off a little. I am anxious to see what her weight is tomorrow at MFB.