MRI Results and Update

Thank you for your prayers for Daniel this summer as we have awaited the results of a second brain and spine MRI. We have felt comforted in knowing that you were joining with us in lifting Daniel up to our Heavenly Father.

A second MRI was done on August 15, and then yesterday (Thursday, Sept. 4) we traveled to Chicago for the follow-up appointment with the neurosurgeon. The appointment was slightly frustrating in that when we arrived at the hospital (after a three-hour drive in the pouring rain), we discovered that the disc from Daniel's first MRI had been misplaced, so the surgeon had to rely on his memory of the first MRI to compare the two tests. His assessment was that he was "fairly certain" that the syrinx (cyst) on Daniel's spinal cord had not changed since May and his recommendation was the we not rush into surgery at this time. We were understandably disappointed about the "missing" disc, and concerned at the doctor's lack of certainty. But the doctor assured us that he would compare the two tests as soon as the missing disc was located and call us if he had changed his opinion. (Note: we just received a call from his nurse saying that they did indeed find the disc shortly after we left, and the doctor, having comparing the two tests, still reports that there was no change in the cyst over the past 3 months.)

The syrinx on Daniel's spinal cord is still of concern and we will closely monitor his progress over the next few months, watching for symptoms of weakness, loss of muscle tone and control, or decreased mobility and/or stamina. If any of these symptoms develop we will of course follow-up immediately; however if no symptoms develop, a routine MRI will be done again in 6 - 12 months.

We are praising God that Daniel will not be facing surgery this fall! When the surgeon described to us exactly what corrective surgery would involve, we cringed at the thought of Daniel having to endure such a risky, invasive procedure. God has heard and answered our prayers for Daniel and has for now protected him from the trauma of surgery. Thank you again for joining with us in prayer!

Daniel with Lindsay and Chris on prom night.

Daniel is using his walker ALL the time now!

Daniel on his new bike.

Daniel and Daddy making Chinese dumplings (still Daniel's favorite food!).

Wearing his mustache and beard - just like Daddy!

Coloring Easter eggs.

Our finished Easter basket.

Once again I find myself having to apologize for not updating Daniel's blog more often. The days are flying by. It is amazing to me that it is already June!! So much has happened the past couple of months - it is hard to know where to begin. I will try to touch on some of the highlights:

• Daniel received his new braces on April 16. Although the insurance "maze" slowed down the process, we ended up with exactly the braces that Daniel needed. He is walking a lot more now and getting around quite fast. He asks to use his walker wherever we go and gets quite annoyed if we want to carry him. He is using his crutches more and more and is becoming much more stable on them all the time. He is also riding a tricycle, which is something we weren't sure he would be able to do. God is so faithful!
• Daniel is currently receiving weekly physical and occupational therapy at Easter Seals. For the most part he is cooperative and determined, although like any child he gets frustrated if he is challenged TOO much. The therapists have identified Daniel's "coping" techiniques - the behaviors that he exhibits whenever he is trying to avoid something that is not easy for him - and are absolutely wonderful at motivating him when he is tired and/or frustrated. We are so thankful for them and the service they are providing.
• We had our IEP meeting with Unit 5 schools on May 13 and it went VERY smoothly! Neil and I had decided ahead of time that we really wanted Daniel to be in Pre-K next fall as opposed to kindergarten, but prior to the meeting we were still unsure as to what the school professionals would recommend. Thankfully, we were given time at the beginning of the meeting to express our opinions and after we finished, the school principal (whose opinion was of course highly regarded), immediately spoke up and wholeheartedly agreed. Following her lead, the whole team agreed that Pre-K was a better option for this fall. Neil and I felt that everyone present was genuinely concerned about Daniel's academic success. We are pleased with the services that Daniel will receive and are comfortable with the decisions that were made on his behalf. We praise God for His covering over the whole process!
• Daniel had minor surgery on May 18 to take care of a urologic concern. He did well with the anesthesia and recovered quickly. He is such a little trooper! He and I will travel by train back to Chicago this Thursday to see the neurosurgeon to go over the results of a brain and spine MRI that was done on May 15. (We are not anticipating any concerns -the doctor simply wanted an MRI done to provide a baseline for future testing.) We have a follow-up appointment with the urologist on June 11 and following that appointment (and barring any unforeseen circumstances), we should be done with appointments until August. I welcome the break. It has been a crazy couple of months traveling to Chicago every other week or so.
• Daniel will start a summer preschool program on June 10. He will attend "school" every Tuesday and Thursday afternoon for 2 hours. He is SO looking forward to going to school! And I am SO looking forward to having a little break a couple of times a week!
• Daniel is playing baseball this summer on the McLean County Autism League. This league is generally for kids with autism, but they are accepting of any child with any disability. The coach's philosophy is, "if a kid wants to play, we'll find a way." It is a little challenging for Daniel to "run" in his walker, but everyone, coaches and kids alike, are very encouraging. He has his very own jersey with his name on the back and his own baseball cap. At his first practice last Monday Daniel had a huge cheering section, as all of his sisters (plus Shannon's boyfriend Aranya) were there to watch. Needless to say he is very excited to be playing.

Well there is LOTS more that I could say, but I think I've written enough for now. The pictures above tell a little more about things that have happened this spring. If you think of us, please pray for a couple of things: (1) We have picked out a wheelchair for Daniel and now must begin the process of getting insurance approval, etc. etc. Please pray that this process will move along quickly. (2) We are considering additional bracing for Daniel's knees. Please pray that God will give us (and the doctors and therapists) wisdom and discernment in this decision. Thanks for your prayers!!

Daniel with the mouse he made at our Chinese New Year party.

Daniel skating with the two of the Mustang players, following his 1st ever hockey game!

I feel embarrassed that it has been SO long since we have updated our blog! I apologize to those of you have faithfully checked it these past weeks. It must have been very disappointing to continually find no new posts! We want to thank all of you who have prayed for us these past weeks. We are all continuing to adjust. Daniel is doing really well, in spite of the changes that have occurred in his life these past weeks. He is eating and sleeping well, learning English VERY quickly, and making new friends through church activities and "playdates." He is involved in several activities each week, including swim lessons, storytime at the library, and "playtime" while Lora attends a ladies' Bible study on Thursday mornings. One of our favorite activites is going to the health club two to three times a week for exercise and/or swimming. He is walking with his walker more and more all the time.

We want to thank those of you who prayed with us about Daniel's appointment at Shriner's Hospital last Thursday. Overall we felt very good about it. We met with most of the Spina Bifida Clinic's "team": a patient care coordinator (aka, a social worker), a dietician, a physical therapist, an occupational therapist, a resident physician, and finally a pediatric orthopedist. Each person asked us many questions about Daniel's health, development and abilities, and performed very comprehensive evaluations/examinations. X-rays were taken of Daniel's spine and pelvis. Daniel was amazingly pleasant and cooperative through it all.

Overall the news was very positive. Daniel's spine is straight with no sign of scoliosis. This is a huge praise! His hips are in-socket which is another huge praise! Although Daniel's hip joints are very weak, the orthopedist doesn't feel that surgery is indicated at this time. He will monitor Daniel very closely (x-rays every 6 months) for awhile to ensure that his hips don't begin to move in and out of socket. (This is a common occurence for kids with spina bifida). If this should happen surgery might be needed down the road.

The orthopedist's biggest concern was regarding Daniel's braces. Most of you know that his current braces are ones that we have borrowed from Easter Seals, and although they are more supportive than what he had in China, they are still not supportive enough. The orthopedist recommended that we have braces made for Daniel as soon as possible. We had already begun that process with Easter Seals, but this has made us more eager to get new braces as soon as possible.

We were a little disappointed that Daniel didn't get to see the urologist and neurosurgeon at this first appointment, but thankfully we won't have to wait too long. His first appointment with the urologist is scheduled for April 3 and his first appointment with the neurosurgeon is on April 17. Following these initial appointments, we will be able to see all three specialists on the same day which will eliminate so many trips back and forth to Chicago.

Our biggest prayer requests right now are: (1) that our insurance company will grant a "gap exception" to Easter Seals, so that they can provide Daniel's OT and PT as an in-network provider; (2) that the orthopedic company that normally provides orthodics to Easter Seals' patients (Plattner Orthopedic Co) will agree to work with us on cost. They are also an out-of-network provider with our insurance company, which means the deductible will be twice as much and the coverage much lower. If we cannot come to some kind of agreement with them we will likely have to choose another orthopedic company; and (3) please continue to pray for Daniel's upcoming evaluations at Unit 5 schools. The evaluations have been moved back to Friday, April 17.

Thanks SO much for your continued prayers!

Merry Christmas to all from the Clements family!!

You can see more pictures of our trip and homecoming at the link below:

http://www.onetruemedia.com/my_shared?z=22859000edad7e6952b17e&utm_source=otm&utm_medium=text_url

Sleeping Through the Night!

I talked to my friend Julie yesterday and she suggested I continue updating our blog for awhile, as communication (on my part) may be difficult these first few weeks or months. I hadn't really thought about it but I think she's right. I don't know how many people will continue to follow our progress, but for those of you who do I hope this will help you to feel a part of our journey.
And, as we said from the very beginning, this blog also serves as a sort of journal for us so that later we can look back and remember what these first few days with Daniel were like.

Daniel slept through the night for the first time last night which was a blessing for him and us. He has been so exhausted but we kept him awake all day yesterday (Sunday), hoping that he would be tired enough to sleep all night. Kristen put him to bed about 10:30 p.m. and he slept until we woke him at 7:30 this morning. Neil and I are still suffering from jet lag ourselves, so we are continuing to wake up anywhere between midnight and 2 a.m. and having trouble getting back to sleep. I am relying on mild sleeping pills that my doctor prescribed for me before we left, but the girls have instructed me that I can only take them for another week. :) They are looking out for me!!

Daniel had more visitors yesterday. Our friends Jim and Jodi stopped by with a meal and spent a little bit of time getting to know Daniel. Again, I was surprised by how well he interacted with them. He is making such progress as it relates to meeting new people. He will now make eye contact and say hello (with a little bit of prompting from us) and will usually carry on a bit of a conversation. Although this sounds like a small thing, for Daniel it is a huge step.

Today was Neil's first day back at work and I know he is struggling to get back into a normal routine. I know he is also missing Daniel and Daniel is missing him. Kristen and Lindsay are taking turns keeping Daniel entertained and busy and I am thankful that they are here to help. I wonder how in the world I will keep him occupied when it is just me and him. After the holidays I will need to get busy finding a playgroup for him. After being with other kids 24-7, I know he will be a bit lonely when the girls go back to school and it is just me and him.

We're Home

I have to apologize for not posting sooner. The past two days are a blur. We arrived back in Bloomington at 2:15 a.m. on Thursday after 30 straight hours of travel. Our flight from Chicago to Bloomington was delayed 3 hours due to "crew delay" and by the time we touched down in Bloomington all three of us were beyond exhaustion. We are all suffering from jet lag, but Daniel especially is having a tough time adjusting. He has been up practically all night the past two nights. We have been trying to keep him awake during the day so that he'll sleep at night but of course that is not easy with a 4-year-old. Our girls have been an absolute god-send these past days as they have played with Daniel, cooked meals, done laundry, etc. etc. Today they have gone to Indiana for the Clements family Christmas get-together so the house is pretty quiet and it is once again just the three of us.

We had our first visitors yesterday - Neil's dad and his wife, Carol - and Daniel seemed to enjoy the visit. He actually interacted with them, which surprised me (as he does not always do well with strangers). They had lots of Christmas presents for him to open so naturally that made him very happy. :)

We have had a lot of fun the past two days as a family. Daniel makes us laugh so much. He is learning English quickly and some of the things he says just cracks us up. He obviously loves his new home and family. We plan to try to make it to church tomorrow, depending on how tonight goes. Thanks for all your prayers and for your comments!!

Last of the Pictures before Home