Kids

Kids

Tuesday, November 18, 2014

Blake - Update

Going back to the beginning of September, we had a few issues with Blake. First, we started noticing that he seemed to not be hearing very good. He was asking "what" a lot. A few days after school started, his teacher emailed me and stated she had concerns about his hearing. So we went to the pediatrician. Turns out he had fluid in his ears. I also mentioned to the doctor that he breathes quite loud and raspy at night. The doctor thought this could be related to the ears. Scheduled a hearing test just to be sure. Hearing test came back normal. The doctor prescribed Flonase and Zyrtec to clear up the fluid in his ears and any congestion. He needed to be on these for 4 to 6 weeks. No serious issue. We were grateful.

After the first week of school, we were contacted by Blake's teachers telling us Blake has been refusing to do his work and has just had a bad attitude. I also had noticed that he seemed a bit more mouthy lately. He always seems to have a difficult time adjusting to school in the Fall, so we all thought that was the issue. I had a good talk with him explaining that he had to do his schoolwork and be respectful to his teachers. We were hoping things would improve in a week or two. I was still a bit concerned because his behavior had improved so much during the Summer. He was respecting authority and tutoring went exceptionally well.

Over the next two weeks, things were not improving. At the very end of the third week of school, I received a phone call from his teacher and an email from his skills support teacher. Blake had a major meltdown - kicking, screaming, hitting desks, flailing temper tantrum, all over something minor. During his flailing, he hit his teacher. After two teachers were able to calm him down, he was sent to his skills support teacher and had another tantrum while talking to her about the first one. He received a "write up" at school which meant he had to apologize to his teachers, fill out a questionnaire on making good choices, and miss two recesses. A school "write up" was a new experience for me.

I was shocked at his behavior. Blake had not had one of these tantrums in almost two years. He had several of them during his first few months home. After Bruce returned home from work, we had an initially very calm talk with him. We asked him if anything was bothering him at school. No issues that we could decipher. We explained his school consequences to him, and he accepted them fairly well. We had talked a head of time and decided that he would lose all privileges for the weekend at home. We felt he needed to know that this behavior is not acceptable. When we told him about his consequence at home, the gloves came off. Another major 30 minute long tantrum ensued. He finally calmed down and the rest of the weekend went fairly well.

Bruce and I were still concerned about this drastic behavior change, as were his teachers. We just didn't think it could be related to starting school. We began reviewing any other changes that went on with him during that first week of school, since this is when the change in behavior started. Then Bruce asked if I thought it could be his medication. I double checked and we started him on the Flonase and Zyrtec shortly after the school year began. I went on the Internet to look at potential side affects of Zyrtec. Now Nicole had taken Zyrtec at some point when she was younger and Emery had also taken it hto clear up fluid in her ears awhile back. Never had any issues. I immediately found several people who said that their child had severe reactions to Zyrtec, including dramatic demeanor changes and violent outbursts. We immediately discontinued the Zyrtec. We had absolutely no issues with Blake the following week at school. His attitude was very good and he was doing his work as requested. At home, his behavior and respectfulness were every bit as good as they were during the Summer. Whew! I was very glad to have that resolved. We have not had any behavior issues with Blake since. I guess you never know how any medication is going to affect your child. I know we will not be giving him any Zyrtec anymore. Grateful we are back to normal in this house!

 

Sunday, November 16, 2014

Neurology - Emery

Post #3 for the weekend and I will finally be caught up with everything regarding Emery. I think I previously posted about Emery's visit last June-ish with the first neurologist. We were not at all happy with this doctor because he did not ask any specific questions about Emery. He believed she didn't talk due to anxiety and wanted us to put her on prozac. We decided at that time to get a second opinion and ended up seeing a neurologist in the Detroit area that specialized in children from orphanages. We had a 10 minute conversation with this doctor and he though Emery's issues were all attachment related. He did agree that we could try prozac and see what happens. He was very adamant that it was a safe drug to try. He also referred us to The Imagine Center where Emery finally received an official diagnosis. So despite our extreme disappointment in our 10 minute consultation, we are very grateful for the referral. We did decide to try Emery on prozac beginning with 1/20th of a normal dose and small weekly increases. We continued consulting with this neurologist via phone regarding the medication. We did not notice any significant changes in Emery while she was taking prozac. She may have been a bit more giddy and less likely to get upset about things, but the difference was minimal. It was becoming difficult having a doctor out of Detroit (2.5 hours from us) managing Emery's medication. We obtained another referral for a neurologist in Grand Rapids. This doctor runs a facility similar to The Imagine Center. This facility is CACN - Children and Adolescent Center for Neurology.

Our consultation at CACN was extremely thorough. The neurologist spent nearly 2 hours asking me questions and observing Emery. He stated that the more therapy we could get for Emery, the better. He understood that due to lack of insurance coverage, ABA therapy was not attainable. He also wanted us to ween Emery off the prozac and see if we notice any negative changes. He felt this was the only way to determine with any certainty whether or not the prozac was helping. He also ordered a 24 hour EKG to completely rule out any seizure activity. We were 100% satisfied with this consultation.

We weened Emery off of the Prozac over a 4 week period and did not notice any significant or negative changes. I spent 24 hours with Emery at CACN for her EKG. It went much better than I expected. I was very concerned about how I was going to keep Emery entertained for such a long time period. But Emery surprised me and did exceptionally well. Bruce brought the kids for a visit and we had take out dinner together to break up the time a bit. Emery slept well and we were back home by 9:00 the next morning. We received the EKG results 2 days later and the results showed no seizure activity.

For now, we are monitoring Emery's progress while attending the autism program at school and keeping her off any other medication. We will have another consultation with her neurologist in January to discuss progress made in her areas of need. It is possible we might have to try another medication for Emery at some time in the future. The doctor wants to wait and see how much she improves being in school full time.

So that is my Emery update. I have some pictures to post but for some reason blogsy will not let me upload them. I now have to wipe up several large puddles in my kitchen that arrived via 4 pairs of snowy kids boots. Apparently, Blake, Emery, Avery, and a friend desperately needed a snack while still in their snow gear! Ah, the joys of living in Michigan. Gotta Love It.

More Emery Updates

As I mentioned in my last post, Emery started school full time on October 14th. She absolutely loves going to school. Her autism class room consists of one autism teacher and two aides. Emery is one of six kids in the class. The maximum number of kids allowed is 7. So the teacher to student ratio is near 2 to 1 at all times. This is a perfect set up for Emery. The classroom is very sensory friendly. Emery receives occupational, speech and sensory therapy during the week. Her therapists provide necessary instructions to the teacher and aides so she is working on her therapy needs throughout her day.

We just had teacher conferences and the teacher and therapists were very excited at how well Emery has adjusted to her new routine. The first week she struggled a bit with following such a set schedule. By the second week, she was right up to speed with her classmates. They were having some trouble with her pushing other kids to engage them in play. I talked to Emery about not pushing kids. Each morning I remind her "no push" and push my hands forward. She began repeating and copying me the first day I did this with her. We also showed her a picture of someone pushing another with an "X" through the picture. Over the next 3 days, the pushing continued to decrease. So we think we have it fairly under control now.

Emery's school is dismissed at the exact same time I am picking up Blake, Conner and Avery from school. So for the first two weeks, Ashley walked to Emery's school to pick her up and walked her back home. With the Michigan Winter season fast approaching, we knew this method was not going to work for long. We decided to have Emery ride the school's special needs bus. Since we live so close to her school, Emery is the last one to be picked up in the morning and the first one to be dropped off in the afternoon. She is not on the bus very long at all, but she absolutely loves riding the bus. She patiently waits in our garage as the bus pulls up until it stops, and then she scoots out to get on, giggling all the way.

I am still taking Emery for her one hour of therapy at Horizons because we are paid up through December. With drive time, Emery has to miss a full afternoon of school to go to Horizons. As much as we love Horizons and Emery's therapist of two years, we will probably discontinue these therapy sessions. If our insurance covered more than one hour of private therapy per week, we would consider continuing. But one hour just doesn't seem worth it.

We did not notice any adjustment issues at home with Emery. She is happy each morning to go to school. Her teacher and therapists thought she would be coming home completely exhausted from having such a structured day. I told them that Emery is rarely exhausted. I promised them I would treat them all to a Starbucks coffee, if she came home tired during her first week. As I expected, I did not have to buy any coffees. Emery is like the energizer bunny!

 

Saturday, November 15, 2014

Catch Up - Emery

I am so behind on blog posts. I will attempt to get caught up over the weekend.  So, my first catch up post will be about Emery.

We had our follow-up meeting with The Imagine Center in September. Emery received a diagnosis of ASD - Autism Spectrum Disorder.  They recommended getting her as much therapy as our insurance would cover and to get her evaluated and placed in our public school system.  We were beyond relief to finally have a diagnosis for Emery.  Since Michigan is one of the states that mandates autism benefits, we thought this diagnosis would definitely get Emery more therapy than the one hour per week she was currently receiving.  Finally, we would be able to get her the help she so desperately needed. The neuro-psychologist recommended speech, occupational, and ABA (applied behavioral analysis) therapy.

Then we were hit with our first disappointment.  The Michigan autism benefits mandate is not applicable to self-insured companies.  Self-insured companies are regulated by the federal government, therefore making them not subject to the state mandate.  Wouldn't you know, Bruce's employer is self-insured.  No additional benefits for the autism diagnosis were available.  I was crushed.  It seemed like every time we thought we had something in place for Emery, it ended up not working out.

We were then directed to MIChild.  MIChild is a Michigan program that helps families cover the cost of medical treatments not otherwise covered by insurance.  Autism therapy treatments are included.  So this was great news.  I had renewed hope.  Then was disappointment #2.  Unfortunately, the MI autism program only applied to children through the age of 5.  Ugh!

We were then directed to CSHCS.  CSHCS (Children's Special Health Care Services) is a program in Michigan that helps cover the cost of services for children with special needs.  The program is available to all ages.  So Emery would qualify, or so we thought.  One of the qualifications is that your child's diagnosis is included in the program.  Out of more that 2700 diagnoses covered by the program, autism is not one of them. 

Emery was caught in limbo.  She didn't qualify for one program due to her age and the program that she met the age requirements, didn't cover her diagnosis.  Yet another disappointment.

We were left with whatever our local public school could offer her.  I can't remember whether or not I ever blogged about my conversation back in January with Special Education Director from our public school.  He had told me that I would have to enroll Emery in a regular class before I could have her evaluated.  I did not see this as an option.  Emery could not be in a regular classroom even if it was only for a month or two.  She would not be able to handle a regular classroom for a day or two.  I tried to explain this to the director, but he was insistent that I needed to enroll her first.

Well, we never did enroll her.  So she was not evaluated.  The professionals at The Imagine Center
informed me that as a resident within the school district, the school was required to evaluate Emery for special needs placement regardless of her current enrollment.  So I obtained a lot of information regarding Emery's rights and contacted the director again.  He again began insisting that I enroll her.  Once he realized I understood our rights, his attitude changed.  We scheduled an evaluation for Emery. 

I was a little wary of the special needs program based on my conversations with the director.  However, I knew we needed to get Emery as much therapy as possible and this was basically our only choice other than private therapy at $200 per hour. 

As it turns out, Emery's evaluation went extremely well.  She was evaluated by the school speech therapist, occupational therapist, psychologist, and social worker.  I was also informed at the evaluation that our district had an elementary autism classroom within walking distance of my house.  This was quite contrary to what the director had told me in January.  He said that Emery would have to be bussed to another district and would most likely be on the bus for one hour each way.  I was so excited to finally be getting some good news.

After the evaluations and recommendation that Emery be placed in the Autism room, the team at the school completed Emery's IEP (individual education plan) and Emery started school full-time on October 14th.  School for Emery is going far better than I ever expected.  The best thing we ever did for Emery was to obtain a diagnosis.  I will give more updates on school in another post.

Wednesday, August 13, 2014

Surgery and other updates

I had my surgery on Monday, the 11th. Everything went well. My ACL was replaced, minor repair to the MCL and the meniscus was only partially shredded so only a minor repair was required. The surgeon estimated I will be on crutches for about 2 weeks. Not too bad. I began rehab therapy yesterday and will go twice a week for 6 weeks. The exercises I have to do are killers, but I know they are necessary for recovery.

I saved some tasks to complete that I could do from the sofa due to my lack of mobility. One of the tasks was updating my blog! I also labeled Blake's school supplies and placed a few school clothes orders online. School shopping is almost complete. We need to take a trip to Shoe Carnival and pick up a few more items and we will be done. School starts August 26th so I will need to finish up for sure next week. Also have haircuts scheduled for all four kids next week.

I finished the kids 2013/2014 memory boxes just before my surgery. That is always a project. Glad it is done. I really need to get working on scrapbooking since Nicole graduates in 3 years and Ashley in 4 years. I am way behind. Just beginning 2008, so I really need to kick it in gear.

We did not go to the cottage this past weekend so I took some time for me. Nicole watched the twins Friday afternoon while Ashley and I went out to lunch and then went to our favorite scrapbooking store, Pages In Time. My sister watched the twins on Saturday while Bruce and I went furniture shopping and out to lunch. We are finally getting new sofas for the living room. Ours are in very bad shape. The new sofas are very inexpensive, but will look better than what we have now. Then on Saturday night, Ashley watched the twins and we had an adult dinner outing at Founders Brewery. I sure enjoyed my 2 days of spoiling myself. Just what I needed prior to surgery!

I thought I was completely done with St. Anthony sports for at least 2 years until Blake was in 5th grade. However, my dear friend asked me to be her assistant volleyball coach for her 5th grade daughter's team. She agreed to assist for me way back when Nicole began volleyball and we barely new each other at the time. So there was no way I could say no. Practice already began on the 11th (coincidence that it was the day of my surgery). Ashley is filling in for me until I'm back on my feet. So much for a break from dealing with all the middle school sports drama at our school. But I am excited to work with my friend again. Looking forward to a good season.

Well that is it for now. It's time for me to do my killer knee exercises again. yikes!

Emery's Evaluation at The Imagine Center

Emery's appointment was last week Tuesday. Bruce had a business meeting on Monday near the appointment, so we left Monday morning and stayed overnight in a hotel in Northville. Bruce went to his afternoon meeting and Emery and I hung out in the hotel room. When Bruce returned, we took Emery down to the pool to swim for awhile. We then enjoyed a nice dinner out. I think Emery enjoyed being an "only child" on this little trip.

Emery's appointment was at noon on Tuesday so we had a leisurely breakfast at the hotel before leaving for the appointment. I had never been to Northville before. It is such a quaint little town. Many small shops, deli's and coffee shops along the main street. I would have loved to walked around and enjoyed the town if it were not for my knee.

I was so nervous about how Emery's appointment would go. In addition to worrying about Emery slipping into an episode and the doctor not being able to adequately evaluate her, I was afraid we would be disappointed as we were with the prior two neurologist appointments.

Well this appointment could not have gone better. The neuropsychologist that worked with Emery was wonderful. Emery was extremely comfortable and completely herself. There is no doubt that she was adequately evaluated. The doctor spent a considerable amount of time asking us questions about Emery. In addition, I filled out several questionnaire forms pertaining to Emery. I provided the doctor with all of Emery's medical records from the orphanage and the timeline I prepared of Emery's development and issues since we adopted her.

The doctor immediately began pouring over the information. She was thankful to have the information and believed it would greatly assist in Emery's evaluation. She asked us may questions regarding Emery's medical records and the timeline. The discussion was very thorough.

The doctor then proceeded with formally evaluating Emery's cognitive abilities. She sat on the floor with Emery and played with her while asking her to complete various tasks. She included Bruce in some of the activities while I completed the questionnaires. In addition, Emery demonstrated her gymnastics skills for the doctor, which was very entertaining for us all.

The doctor discussed several topics with us including institutional autism, special education services through the public schools, state assistance for special needs and ABA therapy (applied behavioral analysis). She indicated that she feels Emery's issues are orphanage related and she believes Emery has a lot of potential.

The next step is for the doctor and her colleagues to get together to review and analyze all of the information about Emery and determine a diagnosis, therapy plan and education plan. Our next appointment is September 9th to discuss the results of the evaluation, the doctors conclusions and obtain a written report.

Overall, I could not be more happy about how this appointment went. I feel we are on the right track with Emery. Having a specific plan in place combined with the right resources is exactly what we need. Praying everything goes just as well at the next meeting.

Wednesday, July 23, 2014

Beginning to Get Back to Normal

We are finally all healthy here. No more flu virus in the house. This week was our first week that was actually fairly normal. I finally received the results of my MRI yesterday. Completely torn ACL, minor tear in MCL, and twisted meniscus. My surgery is scheduled for Aug. 11th. If the meniscus is not torn, I will be on crutches for one week. If it is torn, crutches for six weeks. Praying for one week, obviously. In addition to the surgery, I have to go to rehabilitation therapy twice a week for 6 weeks. Ugh. So very time consuming.

In addition to the flu and injured knee, we also lost Bruce's mom. She passed away almost two weeks ago. We had her funeral last week. We were all expecting her to recover from her back injury, so her death was somewhat of a surprise. She ended up going into cardiac arrest while having a MRI. They revived her but she never regained consciousness. Very sad. During this time, Emery was having an episode, so we had that to deal with as well.

Emery had her appointment with her new neurologist, Dr. Chugani, on Monday, July 14th in West Bloomfield, Michigan. This is what caused the episode. It was an easy 3 hour drive. Emery did great right up until they called her name and weighed her. Then she went into her clinging and whimpering mode. By the time we returned home later in the evening, she was full into one of her severe episodes. She didn't return to normal until Friday night when we left to go to her favorite place, the cottage.

I was so hopeful prior to this appointment based on the recommendation from Emery's therapist and my thorough research on this Doctor. Unfortunately, the appointment didn't go anything like we expected. I was so disappointed, I could have cried. We drove 3 hours one way just to speak to a doctor for 10 minutes. His intern spent about 30 minutes asking us various questions about Emery. Nobody had reviewed the records that I diligently prepared and sent ahead of time. The internist did go retrieve the records and browsed them for a minute or two. The intern's questions were fairly thorough, so I thought the appointment was going well at first. Then Dr. Chugani came in. He chatted quietly for a minute or two with the intern and then talked to us. He talked about how there can be attachment issues when children are in an orphanage beyond the age of two. I told him we were not experiencing any attachment issues. We had neurological concerns. He said he felt that all of Emery's issues were related to being in an orphanage for 7 years.

Although this could very well be true, he did not even look over her records. He didn't ask a single question about her nor did he review our answers to the intern's questions. All he focused on was the fact that she was in an orphanage past the age of two. He barely even let us into the conversation at all.

I could not believe how this consultation was going. I felt crushed. Emery's first neurologist in Grand Rapids completely disregarded Emery's orphanage life and this neurologist only focused on her orphanage life. Maybe this is just how it is in the world of neurology. Each doctor has his specialty and believes every patient just falls into his specialty. I honestly do not know how a doctor can form an opinion without reviewing any records or asking any questions.

Anyway, right near the end of his 10 minute speech, he referred us to one of his colleagues to have Emery evaluated. Finally, the first thing out of his mouth that I agreed with. Emery needs to be evaluated. We need to provide her with the therapy she needs and develop an education plan. It is really difficult to determine what she needs without any specific diagnoses.

So he gave us the necessary contact information. Our new referral is with Dr. Michael Behen . He runs a clinic in Northville, MI called "The Imagine Center". Here is a list of the some of the services they provide:

 

Psychological and Neuropsychological Assessment

  • Obtaining Diagnostic Clarity
  • Psycho-educational
  • Cognitive Testing
  • Learning Disability
  • Comprehensive psychological testing to aid in the diagnosis of social, emotional, and psychiatric problems
  • Neuropsychological Assessment
  • Developmental Disabilities Assessment (for instance autism, developmental delay)

Assessment Services

Psychological and Neuropsychological Assessment – Provides clarity for receiving formal diagnosis (for example, ADHD, learning disorder, cognitive impairment) and for better understanding ongoing behavioral and academic problems. Findings are helpful for receiving academic accommodations and for treatment planning.

Developmental Assessment – assist with diagnosis of Autism Spectrum Disorder, Developmental Delay, Language Disorder


It appears that this clinic provides exactly what we need for Emery. Her appointment is August 5th. I cannot help but being hopeful that we may know what direction to go in to help Emery. We will see.

 

Thursday, July 10, 2014

Not a very good week

Everything is very chaotic in our house right now. It began while on vacation at the cottage. Bruce got bit by something that caused an infection in his leg and made him sick. He was better after a few days and then I injured my knee trying to dock the boat. Either a torn or pulled acl. Cannot get in for an MRI until the 16th. So I have a leg brace and can barely walk at all. In addition to my knee, a became sick with a cough, fever and chills for two or so days after arriving home. I'm just starting to feel a bit better today.

The worse news is that Bruce's mom is in the hospital and not doing well at all. Her issues began about 6 months ago when she fractured 3 bones in her back. Everything has gone down hill since then. Between working and being at the hospital, he has not been around much at all.

I was completely useless while sick and cannot get around very fast with my knee injury. The girls have been keeping up on laundry and meals and helping with the twins. Difficult week to say the least. Emery has been wreaking havoc around the house with minimal supervision. Praying things get better and we can soon return to normal. Prayers for Bruce's mom are appreciated.

 

 

Saturday, July 5, 2014

Family Updates in Pictures


Ashley's Iphone graduation gift
 
My 4 on the 4th
Blake on the last day of 2nd grade with Mrs. Babb
Emery and Ashley at Ashley's graduation dinner celebration
Blake's soccer medal
Emery is ready to go to the cottage
Boat Ride - Ashley
Boat Ride - Blake
Boat Ride - Emery
Blake performing at theater camp
Poor quality pic - but you can see that Blake loved being on stage
Happy Father's Day Dad
Our new old boat!
Ashley's first day of preschool at St. Anthony - age 3
Ashley's last day of 8th grade at St. Anthony - age 14

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Wednesday, June 25, 2014

Life Happenings

Last week was a very busy week.  Blake went to Theater Camp at our local high school each day last week for 3 hours.  The last day the campers performed a play complete with dancing.  Blake loved the camp and being up on stage.  The kid is a natural born performer!  It was a lot of fun and he has already asked if he can do the camp again next Summer. 

Blake also did a one day basketball camp this past Monday at West Catholic high school.  He enjoyed this camp as well.  He was excited to get a West Catholic t-shirt which he promptly dropped directly in a mud puddle on his way out.  Fortunately the shirt is dark green and should wash up just fine. 

We have definitely established a correlation between Blake eating bread and his mood, focus ability and emotional control.  If we allow him to eat bread more than one time in a two day period, he becomes irritable, mouthy, and has difficulty concentrating.  We discovered this via the Feingold diet.  The most likely ingredient/culprit is calcium propionate, a preservative used in most breads.  For Blake, we use the Feingold approved King's Hawaiian Rolls.  It has made a huge difference for him.  He requires very little discipline and homework time is a much happier setting. 

The girls are enjoying their summer break.  Both of them are doing one day a week of daycare for my sister.  Nicole does volunteer work at our local library.  Ashley handles most of my babysitting needs for the twins when needed.  They are also spending a lot of time with their friends.  We are heading up to the cottage this Friday for a 10-day stay.  Hoping we have nice weather.

After having a few short-lived episodes here and there, Emery is back to herself again.  She is happy, silly and naughty!  She gets into everything, drives her brother crazy and is beginning to be a little defiant.  We are still using 6 minute time-ins as a discipline method, but I think we may need to try something different.  I can only drink so much wine in any given day!

Emery is now leg brace free!  The two broken bones in her leg healed perfectly and she is back to bouncing on the tramp.  She is a happy girl! 

We had a follow up meeting with Emery's Grand Rapids neurologist.  He is still pushing us to put her on Prozac.  Unfortunately, Emery was very distraught during the meeting.  She never would get upset going to a doctor appointment.  But, ever since her two extremely long visits at the ER, she is terrified of hospitals and doctor's offices.  She clings to me relentlessly, whimpers, cries silent tears and attempts to hit herself if her hands are not restrained.  This behavior convinced her neurologist that Prozac was necessary.  He said that a 9 year old child should not be so afraid of a doctor visit.  I told him by that standard, my 14 year old daughter would be on Prozac because she is still afraid of shots!  He also noted that she was not engaging with him.  I said it was because she was upset.  At our first visit with him, she engaged with him quite a bit.  He of course, did not remember this.  I asked what diagnosis he was giving her to warrant prescribing Prozac.  He said because she has an intellectual disability.  My husband said we are aware she has a disability.  I then asked him if all of his patients with intellectual disabilities were on Prozac.  He said well no, of course not.  Then he immediately said he thinks she has an anxiety disorder.  Now this I can very well see as being a definite possibility.  Emery could be hitting herself whenever she is overwhelmed by anxiety.  He also thinks she could have obsessive compulsive disorder, but he does not want to give her that diagnosis until it has been six months since her episodes began (which would be June 30th).  Based on my research, it appears that Prozac is much more successful when combined with cognitive behavioral therapy (CBT) or Applied Behavioral Analysis (ABA).  I asked him about this and he said he would not prescribe any therapy or run any other tests until I put her on Prozac.  He didn't ask any questions about Emery at all and basically ignored me if I offered any insight on her behaviors or personality.  Needless to say, we are definitely seeking a second opinion. 

In the process of him updating his notes on his computer, he said, why don't I see the results of her EEG? I told him that he never ordered or mentioned an EEG.  He said, oh well we better have that completed before beginning the Prozac.  So, he ordered an EEG which was scheduled 4 days later.

We have not received the results of the EEG yet.  We did receive a referral to a neurologist at the Children's Hospital of Michigan.  His name is Dr. Chugani and he comes highly recommended by Emery's therapist and several of her other clients.  Based on my research, he appears to extremely knowledgeable with issues of the brain.  Her appointment is July 14th in Bloomfield Hills.  He may agree with her current neurologist.  But, I will feel more comfortable with a second opinion.  I am still in the process of completely a paper picture of Emery so the new neurologist has a good idea of her issues.  Praying we find out what is causing her issues and what is the best way to deal with them. 









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Friday, June 6, 2014

Yet Another Episode

Before Emery even was over her symptoms from the last episode, another one occurred. This time, I can't trace it to a specific illness. Her ears were clear, no swollen lymph nodes, no cough or runny nose.

She woke up a week ago last Tuesday at 3:00 am extremely upset. She always goes to her rocking chair if she wakes up during the night. She was rocking really hard. I thought she was going to rock right out the window. I could not calm her down. She was so distraught. She eventually fell asleep, but woke in the morning back in one of her episodes. Same behaviors as always, hitting her head, hard tics, hair pulling and sobbing relentlessly when she had to get out of her chair. As long as she was in her chair and had her blanket securely tucked around her, she was fine. Happy, content, playing with ipad and blocks, bossing me around, and eating normal as long as I fed her. So very strange. The episode lasted about a week. By the following Tuesday she was getting out of her chair occasionally on her own and by Wednesday she was back to normal. By normal, I mean acting totally like herself but still occasional hitting, tics and hair pulling without being distraught.

I don't even know what to think. I don't understand why she keeps having these severe episodes. Maybe she had a bad dream and her reaction is her way of coping with her feelings. Maybe she was just reacting to the illnesses as opposed to the illnesses causing the behavior. Still processing it all.

She has a follow up appointment with her neurologist next Thursday and we are getting a referral to a neurologist in the Detroit area that specializes in kids with developmental delays. I am in the process of reviewing my blog, notes and emails to her therapist to try to create a timeline of all Emery's not so normal behaviors since she has been home. I need to distinguish between orphanage related behaviors and "other" behaviors. I am hoping the timeline will paint a clearer picture of Emery for the neurologist as well as a refresher for me.

Praying constantly for God to help me help her.

Thursday, May 22, 2014

Emery Update

Prior to breaking her leg, Emery seemed to just be getting out of her latest "episode". These are the episodes that begin with an illness of some sort. The episodes include hair pulling, chin to shoulder tics, and head hitting. Clumps of hair, hard tics, and bruise causing hits. This episode began with a cold on April 3rd. So these OCD symptoms last well beyond the cold. I was grateful the OCD symptoms were lessening both in frequency and intensity. The sores on her knuckles from hitting were even beginning to heal.

After the break, I was terrified the trauma would send her into another episode. But as upset as she was at first, the symptoms did not increase.

Fast forward one week to Monday, May 12th. It appeared to me that she was hitting herself more frequently and harder. Was it just my imagination? She wasn't sick. No cough. No runny nose. Eating normally. Acting fine. On Tuesday, I noticed a clump of hair on the floor near her chair. My mom mentioned the increased hitting. I didn't want to admit it, but I knew the OCD symptoms were increasing and intensifying. By the end of the week, it he symptoms were once again at their worse. Bruising, open knuckle sores, hard tics, and new bald spots.

Ugh. What keeps causing my baby to inflict pain upon herself? I get depressed every time another "episode" begins. I pray constantly that God will help me to help her. Why can't I find what is causing these self-injurious behaviors? Why does the neurology department at DeVos not think this is a pressing issue? What is wrong with my daughter?

On Thursday of last week, Emery's therapist, Erin, checked her ears. Heavy wax build up - again. Erin suggested that maybe Emery has allergies and the allergies are causing the excessive wax and the pressure in her ears is causing her to hit herself. Yet another possible answer to why she is hitting herself. So I feel a touch of hope as I research this latest theory. Allergies do cause excessive wax production. Emery recently had wax build up in her ears and it was cleared up with Debrox. Emery has wax build up again. Her pediatrician stated that it takes about 2 years for someone to develop allergies in a new climate. The timeline fits. Could a daily allergy pill prevent the wax build up and cease the hitting, hair pulling and tics? Could it really be that simple? I have my doubts. Mainly because I am scared to get my hopes up. But I am giving it a try. I talked to the pediatrician and began giving her Benadryl and using the Debrox again. As of today, most of the wax is gone. After a few more days of Debrox and Benadryl, we will start her on an allergy pill. Maybe it will work and the self-injurious behaviors will stop. Praying.

I stumbled on to another possible cause for excessive ear wax production. I will go into this after testing the allergy theory.

Meanwhile, Emery's MRI that was ordered by her neurologist came back normal. No apparent brain injuries or defects. The neurologist also ordered a sacral ultrasound. She has what is called a sacral dimple on her butt. Apparently, this dimple is the result of her spine not forming correctly. This can cause issues in her brain. If she has no weakness in her legs, there is typically no brain issues. Since she has no weakness in her legs, the doctor thinks her brain is fine. He ordered the ultrasound just to be safe. I have been waiting for the ultrasound to be scheduled since April 3rd. I have called several times. I have a child that hits herself until she bruises and has sores on her knuckles but the neurology department doesn't think this is an urgent matter. Really? Why must I fight for medical help for my child? Just another ugh to add to an already long list.

I am emotionally (and probably physically) exhausted from this roller coaster ride. We are well into the fifth month of these issues and still no diagnosis and no solution. It is so hard to watch your child injure herself uncontrollably. She repeatedly asks for her blanket to be tucked securely around her so she cannot hit herself. There is something that will help. I just need to find it. So I will continue to pray, research, bug the doctors and test new theories. Eventually, God will lead me in the right direction. I just hope I don't miss it.

 

Friday, May 16, 2014

Family Happenings

A lot going on the past few weeks. Here is an update in pictures.

 

Ashley's 8th Grade Athletic Banquet
Smiling Emery even with a broken leg
Happy to have new stickers
Blake ready for soccer practice

 

Sleeping Beauty

 

Tramp fun before the injury
Blake and Avery's First Holy Communion
 
Presents!

 

 

Blake and Emery with my Mom and Dad

 

 

Dad, Blake and Mom

 

Traditional Balloon Release by our 1st Communion Kids

My handsome son

 

Celebrating two years home for Blake and Emery at Chuck E Cheese

 

Last day of gymnastics - always being silly

 

 

Ashley and Friends
My monkey (pre-injury)
 

 

Easter Sunday

 

Coloring Easter Eggs

 

 

 
That is a lot of pictures! More updates to come soon.

 

Thursday, May 15, 2014

Just not Emery's year

I can hardly believe I am writing this post. On May 4th, Emery broke her leg bouncing on the tramp. We had only had the tramp up for 2 weeks and already an injury. The sad part of the story is we purchased the tramp mainly for Emery to meet her sensory needs. Now, she can't even use it for several weeks.

The break is just below her left knee. We were in the ER for nearly 6 hours. She was in tremendous pain and was beyond distraught. They got her pain under control within a half hour, but she was so tired and frightened. She just wanted to go home. She was sobbing so hard. In between sobs, she would say "mama, night night". She wanted to be home in her own bed. It was so sad, I had all I could do not to cry myself. They did x-rays and a ct scan. Fortunately, surgery was not needed. They put her leg in a splint and sent us home with instructions to give her Advil and Tylenol for a week.

Within two days she was in pretty good spirits. She still hated getting out of her rocking chair, but her pain was controlled and she was happy. She would not try using the crutches they gave us. So I was taking Advil regularly as well. Carrying around a 54 pound 9 year old with a broken leg is quite challenging. By the weekend, she was getting bored enough to try her crutches and within a day or two, was doing well using them.

She is now off pain meds and is trying to hobble around without her crutches. I am trying to keep her off her leg as much as possible, but she is one determined (and stubborn) little girl. She has a follow up appointment next Monday to see if she will need a cast. They told us in ER that her leg will take 4 to 6 weeks to heal. Every time she looks out the window and sees the tramp, she asks to "bounce". I am praying for quick healing so my little gymnast can get back out there.

I was so angry that this had happened. Emery has had such a rough year so far. I kept wondering when things were going to turn around. I guess God has His own plan. Maybe God gave Emery almost a year and a half of good health so we could devote our energy to her brother during his surgeries and subsequent recoveries. Now maybe God has decided it is Emery's turn. We are devoted to finding out the cause of Emery's issues and helping her any way we can. Since Blake has come so far, we do have the time and energy to focus on Emery. Emery is still having issues, the broken leg is just one more. Fortunately, the leg will heal and this experience will be behind us soon. I am praying we can heal all of Emery soon as well.

 

 

Monday, April 28, 2014

Two Years Home - Dear Emery

You have been with us now for two years Emery. Two years with your forever family. You came to us a tiny frightened little girl. You did not know how to be loved. You never said a word. You never sought help when you were hurt. You never wanted to be tucked in bed at night. But you have blossomed sweetheart. When you say "mama" and put your hands on my cheeks, look deep into my eyes, and then lean in for a kiss, it completely melts my heart. You are a precious little girl. You are full of giggles and happiness. You love to cozy up and adore being tucked in every night. You are now saying many words. You know how to love and how to be loved. Despite your speech issues, you have no problem understanding everything around you. You are a very observant little girl, which sometimes gets you into trouble! Mom knows you are a smart little girl working very hard to overcome the negative effects of your first 7 years. You had a rough few months the beginning of this year. My heart broke to watch you suffer. I am so grateful you are beginning to get better. You are slowly conquering the effects of your illness. I love you with all my heart Emery. Whatever God's plan is for you, you will always be the light of my life. Thank you for letting your family into your heart Emery. You have blessed us beyond anything we could have imagined.