Last Thursday, I decided to work on the insurance company to figure out if they would cover the therapy at Mary Free Bed. Jordan was evaluated on April 2nd and was told that it would be a 14 day process for approval. I contacted Mary Free Bed (MFB) every week after that to see if it had been approved, but it was still in the process. Hannah at MFB was wonderful and called the insurance company each time I called her to see what was going on. Everytime they just told her it was in process. Well, it had been 3 weeks and I wanted an answer so she again called our insurance company. This time when she called me back, they had told her that it was a 30 day process for them and they were on day 15. I was so frustrated!! I also asked how long it would bake to schedule an appointment once insurance approved therapy and she told me it would take about 2 weeks. That meant it would be more than 6 weeks after her evaluation before we might even be able to start therapy!! I wanted to find out what I could do to speed up the process. I needed Jordan to eat better and I couldn't just sit back and wait for everybody to do their paperwork!! Hannah recommended I contact my insurance company directly and see what I could accomplish.
I called and talked to Theresa for about a 1/2 hour. She was very helpful in helping me understand their process as well as my options. After explaining my situation to her, she pulled up my information and viewed the report from MFB. She explained that this was a case that did require them to run a full inquiry and that could take up to 30 days. She also understood that as a mom I was desperate to get the help I felt was necessary for my daughter as soon as possible. She explained that although a full inquiry and approval were necessary for them to cover the therapy, it was not necessary for me to receive the therapy. In other words, if I could work with MFB to move forward with therapy without approval from my insurance company, they would continue their inquiry and may approve at a later date. She also confirmed that it would be retroactive and that any therapy received, if later approved, would be covered. This was a huge relief!!!!
I called Hannah at MFB and asked about moving forward with therapy before my inurance approved it and she explained that I would have to sign a "Self Pay" form. I agreed and was able to schedule Jordan's first therapy appointment. She will start her therapy at Mary Free Bed on Tuesday, May 6th.
Through all of this I have learned how important it is to be an advocate for your children. If I had just waited to hear from them, Jordan might not have started therapy for several more weeks. It's also important to mention that I never got angry or upset with Hannah or Theresa while trying to figure all of this out. At one point while on the phone with Theresa, I did get emotional because of my concern for my baby, but I think it helped her to understand how important and urgent this was to me. It was then that she mentioned that I could move forward without their approval. I know now how important it is to gently push when you need help for your children.
Wednesday, April 30, 2008
Tuesday, April 29, 2008
At 2 1/2 days old...
After we were home from the hospital, Jordan continued to seem fine. On Friday afternoon, I was sitting on the couch in our living room chatting with my friend Kim while nursing Jordan. I looked down at her and realized that she looked blue. Now I know that a newborn has a purple look to them so I was trying to determine if it was a normal color. I realized that something wasn't right. I pulled her off of me and said to Kim "She's blue! Does she look blue to you?" Kim said she wasn't sure, maybe a little bit. I asked her to go get Derrick. I stimulated Jordan by moving her arms and legs around. I looked under her t-shirt to see the color of her body - it was definitely somewhat blue. But she seemed to be breathing now. What had just happened?? When Derrick and Kim came in, her color was returning and she looked more pink. I told Derrick what had happened and we talked about it for a minute. He said "Well, if that happens again, you should probably call the Dr." WHAT!?!? After he left, Kim and I looked at each other and agreed that this wasn't something you wait to see if it happens again. I called the Dr. immediately.
They were concerned and had us bring her in a couple of hours later. We saw Dr. Clark. She said that what had happened was called an ALTE. It stood for an Apparent Life Threatening Event. That phrase took my breath away. I know that life is fragile, but it is very different when you realize how easily it can be gone.
They wanted us to take her to DeVos Children's Hospital to have her monitored for a few days. We arrived at the hospital Friday night around 5:30 and they immediately started hooking her up to machines to moniter her heart rate, breathing rate, and oxygen level. Over the next few days she was monitored and many tests were run to see if they could find anything that would have caused her to stop breathing. They did bloodwork, 2 sets of x-rays, an echocardiogram, and an upper gi. Most of the results were within the normal range. There were some minor things they found, but nothing that concerned them.
It was extremely difficult to be in the hospital with Jordan only days after she was born. I wanted to be settling in at home spending time with my family and sleeping in my own bed, but instead, I was sleeping at the hospital and only saw my family for short time periods. I was sooo glad when they finally let us go home on Monday afternoon. They never fully determined what caused the breathing episode but seemed to think it was apnea.
We had Jordan on a portable monitor that continued to monitor her heart and breathing rate for 3 months. It felt so good to finally be home. Jordan had only a few apnic episodes according to the monitors but nothing that ever created another scare for us. We eventually became comfortable with her progress and assumed it was a fluke incident and that we didn't need to worry about it anymore. We finally took her off the monitor and trusted that she would be fine. We never again noticed anything unusual with her breathing.
They were concerned and had us bring her in a couple of hours later. We saw Dr. Clark. She said that what had happened was called an ALTE. It stood for an Apparent Life Threatening Event. That phrase took my breath away. I know that life is fragile, but it is very different when you realize how easily it can be gone.
They wanted us to take her to DeVos Children's Hospital to have her monitored for a few days. We arrived at the hospital Friday night around 5:30 and they immediately started hooking her up to machines to moniter her heart rate, breathing rate, and oxygen level. Over the next few days she was monitored and many tests were run to see if they could find anything that would have caused her to stop breathing. They did bloodwork, 2 sets of x-rays, an echocardiogram, and an upper gi. Most of the results were within the normal range. There were some minor things they found, but nothing that concerned them.
It was extremely difficult to be in the hospital with Jordan only days after she was born. I wanted to be settling in at home spending time with my family and sleeping in my own bed, but instead, I was sleeping at the hospital and only saw my family for short time periods. I was sooo glad when they finally let us go home on Monday afternoon. They never fully determined what caused the breathing episode but seemed to think it was apnea.
We had Jordan on a portable monitor that continued to monitor her heart and breathing rate for 3 months. It felt so good to finally be home. Jordan had only a few apnic episodes according to the monitors but nothing that ever created another scare for us. We eventually became comfortable with her progress and assumed it was a fluke incident and that we didn't need to worry about it anymore. We finally took her off the monitor and trusted that she would be fine. We never again noticed anything unusual with her breathing.
Wednesday, April 23, 2008
Labor & Delivery
Well, once I was in the room and hooked up to machines, I continued to need to pee every 1/2 hour. Derrick and I made a few phone calls and he took off to go home and get things situated with the kids and to get our bags. My nurse was awesome and we had some great conversations! My labor didn't progress very quickly until they broke my water. At that point, I was feeling more comfortable about the situation. All of the monitors were making sure Jordan and I were okay and that provided a lot of reassurance.
Well, labor progressed and around 9:30 pm Jordan started showing of distress. They decided to place an internal monitor on her head a little while earlier and now they felt she was not doing well. They wanted to put water back in the uterus to relieve some of the pressure on her and see if she did any better. She started the process, but in a matter of about 2 minutes quickly went from 7 cm to 10 cm and they needed to get her out quickly. They had me turn over on all 4's to try to relieve the pressure until they were ready for the delivery. They began the delivery and found that the cord was wrapped tightly around her neck. After delivering the head, she tried to loosen the cord and then deliver her. Jordan was born at 10:01pm on June 12, 2007.
The quietness in the room was unnerving. We kept waiting to hear Jordan cry. They took her over to the heated bassinett and tried to stimulate her...still nothing. Derrick had been videotaping the delivery from over my shoulder at the bed and he followed them when they took her to the bassinett. The Dr. who had just delivered Jordan and was working on me, made her way over to the bassinett to see if she could help. After about 3 1/2 minutes, she still wasn't breathing...he turned the camera off. What if this didn't turn out the way we expected...what if she didn't make it...we didn't want it on video. Within a minute of that point, she started crying! What a beautiful sound!! They continued to suction her and stimulate her to get her color and breathing what it should be.
When the Dr. returned to me, she said that I didn't need to worry. She said that lots of babies take a few minutes to start breathing and that everything would be okay. I asked lots of questions about what the side effects could be and she continued to reassure me that everything would be fine. Her 5 minute apgar score was 9 out of 10 - that was good! I wanted to believe her and so I just enjoyed the sound of my crying baby girl!!
The Dr. delivered the placenta and informed me that it didn't look good. She asked how far along I was and was surprised when I told her 39 weeks. She said the placenta looked small, old, and dried up - more typical of a 42-43 week placenta. She said that she would send it in to the labs to have it checked out.
Everything seemed to be fine with Jordan for the remainder of our hospital stay. She was 5 lbs 12 oz and 17 inches long but had no noticiable complications. I was relieved to get through that fearful experience and enjoy my tiny, beautiful treasure!
Well, labor progressed and around 9:30 pm Jordan started showing of distress. They decided to place an internal monitor on her head a little while earlier and now they felt she was not doing well. They wanted to put water back in the uterus to relieve some of the pressure on her and see if she did any better. She started the process, but in a matter of about 2 minutes quickly went from 7 cm to 10 cm and they needed to get her out quickly. They had me turn over on all 4's to try to relieve the pressure until they were ready for the delivery. They began the delivery and found that the cord was wrapped tightly around her neck. After delivering the head, she tried to loosen the cord and then deliver her. Jordan was born at 10:01pm on June 12, 2007.
The quietness in the room was unnerving. We kept waiting to hear Jordan cry. They took her over to the heated bassinett and tried to stimulate her...still nothing. Derrick had been videotaping the delivery from over my shoulder at the bed and he followed them when they took her to the bassinett. The Dr. who had just delivered Jordan and was working on me, made her way over to the bassinett to see if she could help. After about 3 1/2 minutes, she still wasn't breathing...he turned the camera off. What if this didn't turn out the way we expected...what if she didn't make it...we didn't want it on video. Within a minute of that point, she started crying! What a beautiful sound!! They continued to suction her and stimulate her to get her color and breathing what it should be.
When the Dr. returned to me, she said that I didn't need to worry. She said that lots of babies take a few minutes to start breathing and that everything would be okay. I asked lots of questions about what the side effects could be and she continued to reassure me that everything would be fine. Her 5 minute apgar score was 9 out of 10 - that was good! I wanted to believe her and so I just enjoyed the sound of my crying baby girl!!
The Dr. delivered the placenta and informed me that it didn't look good. She asked how far along I was and was surprised when I told her 39 weeks. She said the placenta looked small, old, and dried up - more typical of a 42-43 week placenta. She said that she would send it in to the labs to have it checked out.
Everything seemed to be fine with Jordan for the remainder of our hospital stay. She was 5 lbs 12 oz and 17 inches long but had no noticiable complications. I was relieved to get through that fearful experience and enjoy my tiny, beautiful treasure!
Before Jordan Was Even Born!
For those of you who don't know of the situation at the end of my pregnancy with Jordan, I thought I would explain it.
When I was 34 weeks along in my pregnancy, I asked my Dr., Melinda Johnson, if I was small for how far along I was because people were constantly telling me I didn't look that big. I had noticed that in all of my pregnancies, I didn't really look pregnant until I was almost 7 months. (I have a boob theory, but I won't go into detail here - ask me if you want to know it.) Anyway, she said I was measuring slightly small but nothing to be concerned about, but just to make sure, she ordered an ultrasound at my 36 week appt. to check if everything was okay.
At my ultrasound they found that everything looked good with Jordan and she was measuring approximately 5 lbs 5 oz indicating that with normal growth she would be about a 7 lb baby. They did however, notice that my amniotic fluid levels were slightly low and I needed to work on increasing that. I was put on partial bedrest and told to take it easy and keep my feet up as much as possible and to drink lots of water. I almost laughed!! I had an extremely busy 2 year-old at home and couldn't imagine how I would possibly be allowed to sit and rest during the day. Well, I tried as much as I could to keep my feet up and drink lots of water but it was the last few weeks of school for Mak and there was lots going on. Not to mention, Conner's busy lifestyle and preparing for baby #3.
The following week (37) they did another ultrasound. This one showed that my fluids increased and were now at the minimum level of what she considered "acceptable." She encouraged me to continue to do what I was doing, but even more so because if my numbers weren't up, she was going to induce me. She explained that the low fluid levels were likely to cause extra pressure on the baby and that it could complicate things during delivery.
Then at week 38, my fluid levels were down and she was talking like she was going to send me to be induced. I begged her not to! Derrick was at work in Zeeland and Mak had just finished 6th grade the day before and he was at Michigan Adventure's for the day with his choir and it was going to be nearly impossible to get him home. She agreed as long as I did nothing except lay in bed and drink water for the next 4 days! She also ordered a non-stress test to make sure Jordan seemed to be doing okay with the low fluid levels. Once we woke her up (she slept for the first 20 minutes of the test), everything looked great with her. I went home and layed in bed and drank approx. 100 oz water every day! I also peed about every 30 minutes!
On Tuesday, June 12th, I went back in for my appt. but this time I brought Derrick because I was scared to be there alone. I was exactly 39 weeks and had followed her instructions for 4 days. They first performed a non-stress test which again showed nothing of concern - once they woke her up again! I then went in for my ultrasound. We were in the room waiting to see her when Dr. Johnson came in and the first words out of her mouth were "You're having a baby today!!" I was not expecting that! She showed us that based on the ultrasound, the cord was no longer working properly - it basically was sloshing back and forth but there was nothing getting to Jordan anymore. The weight check was also a concern. Since the ultrasound at 36 weeks, she had only gained 3 oz! So the prediction for a 7 lb baby wasn't correct - Jordan was measuring at only 5 lbs 8 oz! She was very concerned and wanted to get us over to Labor and Delivery and get me and the baby hooked up to machines to monitor us asap. It had been about a 1/2 hour since I had peed and I needed to go again but she didn't even want to wait a few minutes because she was so concerned - however, she did let me go once I explained that I had been peeing every 1/2 hr because of the huge amount of water I was drinking.
This was extremely scary for us! All of a sudden we were put into a situation where things weren't okay. We didn't know what to expect and we didn't know if things were going to be okay. I started doubting if I should have waited for the weekend or let her induce me last week when she wanted to. Had I not pushed her to wait, would everything have been okay with Jordan. I just wanted to do whatever they asked to ensure I had a healthy baby delivered. This was the first time that I felt the fear of something not being right. Although my fluid levels had been low, she wasn't overly concerned. She said it was controllable. Now, she was urgently pushing me to deliver this baby as soon as possible. I was scared!!!
After going to the bathroom, I was rushed over to Labor and Delivery where I was hooked up to machines and the induction process began!
When I was 34 weeks along in my pregnancy, I asked my Dr., Melinda Johnson, if I was small for how far along I was because people were constantly telling me I didn't look that big. I had noticed that in all of my pregnancies, I didn't really look pregnant until I was almost 7 months. (I have a boob theory, but I won't go into detail here - ask me if you want to know it.) Anyway, she said I was measuring slightly small but nothing to be concerned about, but just to make sure, she ordered an ultrasound at my 36 week appt. to check if everything was okay.
At my ultrasound they found that everything looked good with Jordan and she was measuring approximately 5 lbs 5 oz indicating that with normal growth she would be about a 7 lb baby. They did however, notice that my amniotic fluid levels were slightly low and I needed to work on increasing that. I was put on partial bedrest and told to take it easy and keep my feet up as much as possible and to drink lots of water. I almost laughed!! I had an extremely busy 2 year-old at home and couldn't imagine how I would possibly be allowed to sit and rest during the day. Well, I tried as much as I could to keep my feet up and drink lots of water but it was the last few weeks of school for Mak and there was lots going on. Not to mention, Conner's busy lifestyle and preparing for baby #3.
The following week (37) they did another ultrasound. This one showed that my fluids increased and were now at the minimum level of what she considered "acceptable." She encouraged me to continue to do what I was doing, but even more so because if my numbers weren't up, she was going to induce me. She explained that the low fluid levels were likely to cause extra pressure on the baby and that it could complicate things during delivery.
Then at week 38, my fluid levels were down and she was talking like she was going to send me to be induced. I begged her not to! Derrick was at work in Zeeland and Mak had just finished 6th grade the day before and he was at Michigan Adventure's for the day with his choir and it was going to be nearly impossible to get him home. She agreed as long as I did nothing except lay in bed and drink water for the next 4 days! She also ordered a non-stress test to make sure Jordan seemed to be doing okay with the low fluid levels. Once we woke her up (she slept for the first 20 minutes of the test), everything looked great with her. I went home and layed in bed and drank approx. 100 oz water every day! I also peed about every 30 minutes!
On Tuesday, June 12th, I went back in for my appt. but this time I brought Derrick because I was scared to be there alone. I was exactly 39 weeks and had followed her instructions for 4 days. They first performed a non-stress test which again showed nothing of concern - once they woke her up again! I then went in for my ultrasound. We were in the room waiting to see her when Dr. Johnson came in and the first words out of her mouth were "You're having a baby today!!" I was not expecting that! She showed us that based on the ultrasound, the cord was no longer working properly - it basically was sloshing back and forth but there was nothing getting to Jordan anymore. The weight check was also a concern. Since the ultrasound at 36 weeks, she had only gained 3 oz! So the prediction for a 7 lb baby wasn't correct - Jordan was measuring at only 5 lbs 8 oz! She was very concerned and wanted to get us over to Labor and Delivery and get me and the baby hooked up to machines to monitor us asap. It had been about a 1/2 hour since I had peed and I needed to go again but she didn't even want to wait a few minutes because she was so concerned - however, she did let me go once I explained that I had been peeing every 1/2 hr because of the huge amount of water I was drinking.
This was extremely scary for us! All of a sudden we were put into a situation where things weren't okay. We didn't know what to expect and we didn't know if things were going to be okay. I started doubting if I should have waited for the weekend or let her induce me last week when she wanted to. Had I not pushed her to wait, would everything have been okay with Jordan. I just wanted to do whatever they asked to ensure I had a healthy baby delivered. This was the first time that I felt the fear of something not being right. Although my fluid levels had been low, she wasn't overly concerned. She said it was controllable. Now, she was urgently pushing me to deliver this baby as soon as possible. I was scared!!!
After going to the bathroom, I was rushed over to Labor and Delivery where I was hooked up to machines and the induction process began!
Tuesday, April 15, 2008
The past few weeks
The past few weeks have been very encouraging! We have seen Jordan start to accept foods and other objects put in her mouth. She is pushing up more when placed on her belly and starting to clap. Small accomplishments, but a good sign!
The past few days she hasn't been feeling well and hasn't eaten much solid food but before then, she was taking about 1/4 cup cereal made with 1-2 oz. formula at lunch and dinner as well as 1/2 -1 container of stage 2 fruits or veggies per meal. She is trying new foods every couple of days and I even got her some "Pirate's Booty" (suggested by her therapist) as a solid (not pureed) food to try soon! She also started drinking out of a sippy cup. We put a few oz of formula in it and she sips on it throughout the meal. She usually takes about 1/2 -1 oz per meal. The only downside to all of her eating is that she isn't nursing as much. I am kinda concerned about her not getting enough, but the nurse said she only need 12-18 oz per day at her age. I will talk to the therapist at Mary Free Bed when we go in there (hopefully soon!!)
Jordan is also doing well when we use a baby toothbrush to move around inside her mouth. She used to guard all the time and now uses her toungue to play with the toothbrush! Her gag reflex is still pretty far forward in her mouth and we are continuing to try to improve that. In fact, her gag reflex is pretty severe, because when I tried to give her the antibiotics prescribed by her doctor yesterday, she threw up because of the taste/consistency. When I tried again later, she did it again. The worst part was that at bedtime I tried to give her the Zantac and she gagged again. It seemed that any time of medicine dispenser is immediately gagged on. We will be heading in to the doctor again today to see if there's anything else they can do to help her.
Jordan's clapping is soooo cute! The only thing we are kinda concerned about is that she holds her left hand still in a strange position and claps her right hand into it. I will talk to Betsy about it next week when she starts therapy.
Overall, we are happy with the accomplishments we see. The hard part for me is trying to fit it all into my busy days! Most of it can be done throughout the day as I am going about my regular routine, but I find many days that aren't routine and at bedtime I realize I haven't done any therapy with her all day long. I am trying hard not to feel guilty and know that it is beneficial for her anything I do, even if it's not as much as I would truly like to be doing.
The past few days she hasn't been feeling well and hasn't eaten much solid food but before then, she was taking about 1/4 cup cereal made with 1-2 oz. formula at lunch and dinner as well as 1/2 -1 container of stage 2 fruits or veggies per meal. She is trying new foods every couple of days and I even got her some "Pirate's Booty" (suggested by her therapist) as a solid (not pureed) food to try soon! She also started drinking out of a sippy cup. We put a few oz of formula in it and she sips on it throughout the meal. She usually takes about 1/2 -1 oz per meal. The only downside to all of her eating is that she isn't nursing as much. I am kinda concerned about her not getting enough, but the nurse said she only need 12-18 oz per day at her age. I will talk to the therapist at Mary Free Bed when we go in there (hopefully soon!!)
Jordan is also doing well when we use a baby toothbrush to move around inside her mouth. She used to guard all the time and now uses her toungue to play with the toothbrush! Her gag reflex is still pretty far forward in her mouth and we are continuing to try to improve that. In fact, her gag reflex is pretty severe, because when I tried to give her the antibiotics prescribed by her doctor yesterday, she threw up because of the taste/consistency. When I tried again later, she did it again. The worst part was that at bedtime I tried to give her the Zantac and she gagged again. It seemed that any time of medicine dispenser is immediately gagged on. We will be heading in to the doctor again today to see if there's anything else they can do to help her.
Jordan's clapping is soooo cute! The only thing we are kinda concerned about is that she holds her left hand still in a strange position and claps her right hand into it. I will talk to Betsy about it next week when she starts therapy.
Overall, we are happy with the accomplishments we see. The hard part for me is trying to fit it all into my busy days! Most of it can be done throughout the day as I am going about my regular routine, but I find many days that aren't routine and at bedtime I realize I haven't done any therapy with her all day long. I am trying hard not to feel guilty and know that it is beneficial for her anything I do, even if it's not as much as I would truly like to be doing.
Friday, April 4, 2008
The tests ... and results
The first testing we had done was her bloodwork. On Monday, March 17th, Conner, Jordan and I packed up and headed downtown to Spectrum Hospital where we went to the lab to have bloodwork done. Jordan sat on my lap and I held her tight as they poked each of her arms working hard to find a good vein. One lab tech held her arm and the other worked on collecting the blood. At one point, they were having a hard time finding the vein and they switched. Jordan was soooo good through this process. She cried a little, but was amazingly calm through most of it.
We received the results later in the week. Everything came back normal. Basically, they ruled out a metabolic disorder or complications with her organ functions. That was reassuring!!
On Tuesday, March 25th, we had a visit from 2 therapists from Ken-O-Sha/Early On. Betsy Emelander (physical) and Kristin Willey (occupational) came to our home and we spent just over an hour in Jordan's bedroom playing on the floor. Cheryl Schut was a wonderful friend and came over to play with Conner in the basement and then put him down for his nap. The therapists left that day basically informing me that Jordan qualified for their services and they would be back in a week with a full developmental assesment report.
On Tuesday, April 1st, Betsy Emelander came back to discuss the results with us. Derrick took the day off to be there so that we both had a full understanding of what they determined was going on with her and the course of treatment. The report was 4 pages typed!! I was amazed at the detail that both of the ladies were able to get out of that 1 hour of time with Jordan! Here is a brief summary of that report:
Hearing - inconsistent response - more on left - especially when engaged in something
Vision - not formally evaluated - tracked well / converged spontaneously
Gross Motor - on back - kicked legs simultaneously/not reciprocally; clapped feet together; turns head to either side - reaches for item with same arm; doesn't cross arm or leg over in attempt to roll; on tummy - briefly lifts head and then rests on floor turned toward left - did not turn to right but would allow to be passively turned - left it briefly and then turned back to left. Unable to lift on forearms or extented arms, roll from tummy, or pull forward on tummy. Started sitting at 9 months - when sitting maintains balance and reaches for objects to front/sides. Unable to get down from sitting or to assume position. When placed in standing - initially extended and put weight on feet, but locked knees. Good muscle bulk but evidence of joint laxity - especially hands/knees. Gross motor skills scattered up to approx. 6 months with prone skills at approx. 1 month.
Fine Motor/Visual Perceptual - reaches for toys - more freely with left arm and more refined with right hand. inferior pincer grasp w/ right and and isolates right index finger to poke something. When sitting - sometimes retracts shoulders and extends arms locking elbows. Able to lift peg out of pegboard w/ left hand but not right. When encouraged to clap/bang - moved right hand to left but never clapped/banged. Easier to place left thumb around object. Fingers hyperextend especially at MCP joints. Functional fine motor skills up to 5 months with scattered skills in 6-8 months.
Thinking, Learning, and Playing - with bell or rattle - shakes but doesn't bang on surface. finds partially hidden toy, but not completely hidden. uncovers face to play peek-a-boo and brings mirror to face. Looks to floor when something falls and pulls string to get toy. Not observed/reported to do any motor imitation. Cognitive skills approx. 5 months.
Speech/Language
Expressive Language - Sounds include: "ah", "b", "rah", "w" and sounds in back of throat. Doesn't bring lips together for "m" or make "d" sounds. Various voice inflections - crying is either whining or forceful. Vocalizes to others, engages in vocal play along and with others. Expressive language in 3-6 month range.
Receptive Language - responses were inconsistent. Cues in visually and is is very social and interactive. Doesn't always respond to sound if playing with toy. Receptive language skills emerging in 3-6 month range.
Social/Emotional - happy throughout eval. and never fussed. Skills scattered in 4-6 month range.
Relating to People - very social - initiates social contact by smiling/vocalizing. No signs of stranger anziety. Good eye contact, laughs w/ frolic play.
Play Skills/Attention - interest in other's play - reaches to grap toy. Explores by bringing to mouth (not in) and shaking. Does not bang toys/motor imitation.
Self-Awareness/Emotional Expression - gererally happy - seldom fusses. Brings mirror close to face. Sometimes quiets to parents' voices but wants to be held for comfort.
Self-Help/Self-Care
Feeding - breastfed and given stage 1 foods. If mom not avail. given bottle - but only takes small amount. Never cries to signal hunger - kept on regular feeding schedule. Coordinates suck/swallow/breathe pattern - doesn't gulp - needs encouragement to stay latched on.
Doesn't like yellow veggies/some fruits/hasn't had meats yet. Soft bread/veggie puff - lets sit on tongue and sometime gags on it. Uses tongue thrust if doesn't like food.
Sleeping - napped only 15-20 minutes until 5 months. Now about 1 hr in am and 1 hour in pm. Sleeps through night.
Summary/Recommendations - significantly behind in prone skills and mobility and some difficulties/delays in overall development. Qualifies for special education services as Early Childhood Developmentally Delayed (ECDD). Jordan will be receiving therapy with Betsy 1 time per week starting on April 25th.
Finally, on Wednesday, April 2nd, Jordan was evaluated at Mary Free Bed for her Oral Motor Skills. They found she had a tongue guard meaning she blocks the back of her mouth with her tongue. This is often found in babies with reflux. She also seemed to dislike having things put in her mouth and would guard in those situations as well. She was very glad we started her on Zantac after her 9 month check up and thinks that within a month or 2 she should be no longer reacting to the severe reflux and the problems it caused. She recommended putting lots of things in her mouth for 3-5 seconds at a time and getting her used to it. She recommended therapy 2 times per week for 2 months. We are waiting for insurance to approve the therapy before she is scheduled.
We received the results later in the week. Everything came back normal. Basically, they ruled out a metabolic disorder or complications with her organ functions. That was reassuring!!
On Tuesday, March 25th, we had a visit from 2 therapists from Ken-O-Sha/Early On. Betsy Emelander (physical) and Kristin Willey (occupational) came to our home and we spent just over an hour in Jordan's bedroom playing on the floor. Cheryl Schut was a wonderful friend and came over to play with Conner in the basement and then put him down for his nap. The therapists left that day basically informing me that Jordan qualified for their services and they would be back in a week with a full developmental assesment report.
On Tuesday, April 1st, Betsy Emelander came back to discuss the results with us. Derrick took the day off to be there so that we both had a full understanding of what they determined was going on with her and the course of treatment. The report was 4 pages typed!! I was amazed at the detail that both of the ladies were able to get out of that 1 hour of time with Jordan! Here is a brief summary of that report:
Hearing - inconsistent response - more on left - especially when engaged in something
Vision - not formally evaluated - tracked well / converged spontaneously
Gross Motor - on back - kicked legs simultaneously/not reciprocally; clapped feet together; turns head to either side - reaches for item with same arm; doesn't cross arm or leg over in attempt to roll; on tummy - briefly lifts head and then rests on floor turned toward left - did not turn to right but would allow to be passively turned - left it briefly and then turned back to left. Unable to lift on forearms or extented arms, roll from tummy, or pull forward on tummy. Started sitting at 9 months - when sitting maintains balance and reaches for objects to front/sides. Unable to get down from sitting or to assume position. When placed in standing - initially extended and put weight on feet, but locked knees. Good muscle bulk but evidence of joint laxity - especially hands/knees. Gross motor skills scattered up to approx. 6 months with prone skills at approx. 1 month.
Fine Motor/Visual Perceptual - reaches for toys - more freely with left arm and more refined with right hand. inferior pincer grasp w/ right and and isolates right index finger to poke something. When sitting - sometimes retracts shoulders and extends arms locking elbows. Able to lift peg out of pegboard w/ left hand but not right. When encouraged to clap/bang - moved right hand to left but never clapped/banged. Easier to place left thumb around object. Fingers hyperextend especially at MCP joints. Functional fine motor skills up to 5 months with scattered skills in 6-8 months.
Thinking, Learning, and Playing - with bell or rattle - shakes but doesn't bang on surface. finds partially hidden toy, but not completely hidden. uncovers face to play peek-a-boo and brings mirror to face. Looks to floor when something falls and pulls string to get toy. Not observed/reported to do any motor imitation. Cognitive skills approx. 5 months.
Speech/Language
Expressive Language - Sounds include: "ah", "b", "rah", "w" and sounds in back of throat. Doesn't bring lips together for "m" or make "d" sounds. Various voice inflections - crying is either whining or forceful. Vocalizes to others, engages in vocal play along and with others. Expressive language in 3-6 month range.
Receptive Language - responses were inconsistent. Cues in visually and is is very social and interactive. Doesn't always respond to sound if playing with toy. Receptive language skills emerging in 3-6 month range.
Social/Emotional - happy throughout eval. and never fussed. Skills scattered in 4-6 month range.
Relating to People - very social - initiates social contact by smiling/vocalizing. No signs of stranger anziety. Good eye contact, laughs w/ frolic play.
Play Skills/Attention - interest in other's play - reaches to grap toy. Explores by bringing to mouth (not in) and shaking. Does not bang toys/motor imitation.
Self-Awareness/Emotional Expression - gererally happy - seldom fusses. Brings mirror close to face. Sometimes quiets to parents' voices but wants to be held for comfort.
Self-Help/Self-Care
Feeding - breastfed and given stage 1 foods. If mom not avail. given bottle - but only takes small amount. Never cries to signal hunger - kept on regular feeding schedule. Coordinates suck/swallow/breathe pattern - doesn't gulp - needs encouragement to stay latched on.
Doesn't like yellow veggies/some fruits/hasn't had meats yet. Soft bread/veggie puff - lets sit on tongue and sometime gags on it. Uses tongue thrust if doesn't like food.
Sleeping - napped only 15-20 minutes until 5 months. Now about 1 hr in am and 1 hour in pm. Sleeps through night.
Summary/Recommendations - significantly behind in prone skills and mobility and some difficulties/delays in overall development. Qualifies for special education services as Early Childhood Developmentally Delayed (ECDD). Jordan will be receiving therapy with Betsy 1 time per week starting on April 25th.
Finally, on Wednesday, April 2nd, Jordan was evaluated at Mary Free Bed for her Oral Motor Skills. They found she had a tongue guard meaning she blocks the back of her mouth with her tongue. This is often found in babies with reflux. She also seemed to dislike having things put in her mouth and would guard in those situations as well. She was very glad we started her on Zantac after her 9 month check up and thinks that within a month or 2 she should be no longer reacting to the severe reflux and the problems it caused. She recommended putting lots of things in her mouth for 3-5 seconds at a time and getting her used to it. She recommended therapy 2 times per week for 2 months. We are waiting for insurance to approve the therapy before she is scheduled.
The beginning of the journey...
In the past few weeks, we have gone from thinking we had a very healthy, petite, slightly lazy, absolutely adorable little baby girl. Then her 9 month checkup on March 14th changed things. She was diagnosed with "Failure to Thrive?" (question mark included in her diagnosis) and our journey began to figure out what was going on with her. Since then we have had bloodwork done at Spectrum Hospital, a Developmental Assesment done by therapists from Ken-O-Sha/Early On, and a Oral Motor Skills Evaluation done at Mary Free Bed. I will discuss the results of it all later...
I am not sure exactly what I felt at first, other than, "what have I done or not done to cause this?" Was I so busy trying to be a mom to all of my kids, that I didn't give her all she needed? I don't feel like I neglected her, but I sure was busy with Conner during the past 9 months. I understand that it necessarily "my fault" but I wonder... what could I have done differently? Why didn't I see it sooner? What does the future hold?
I am not sure exactly what I felt at first, other than, "what have I done or not done to cause this?" Was I so busy trying to be a mom to all of my kids, that I didn't give her all she needed? I don't feel like I neglected her, but I sure was busy with Conner during the past 9 months. I understand that it necessarily "my fault" but I wonder... what could I have done differently? Why didn't I see it sooner? What does the future hold?
Jordan's Blossom
I guess I should explain why I chose this title. Well, I originally wanted to call it Jordan's Journey (everybody loves alliteration, right?!?) Anyway, that title was already being used so I looked up the word "journey" in the thesaurus (actually, thesaurus.com) and found the word "progress" was a goood, positive description of what I want to see. I didn't, however, like the sound of the word - it was too medical for my tastes. But listed under "progress" was the word "blossom." It was perfect!! My beautiful, baby girl just needs to blossom. That's what this journey is all about for me. I want to see her grow, develop, progress, and blossom!
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