A Little More Info - Stitches

Mommy and Daddy were in the kitchen and the girls had just taken some tin cans to the recycling. They came in the front door and were walking across the living room pergo floor whenwe heard a horrible THUD! The kind that comes with a pit-of-your-stomach feeling that something is not right. The kind that immediately is followed by the most gruesome painful scream that only a child can make. Within minutes we were on our way to the hospital. A 45-55 minute trip that lasted something just less than 30 minutes.

Here is what Rebekah looked like when we got to the hospital. Daddy had cleaned up a lot but there was no way he was going to be able to "fix" this one:




And here is what it looked like about 2 hours later:




She pretty much screamed at the top of her lungs for about 3-4 hours. EVERYTHING set her off. We had a great nurse in the ED that had worked with us when we were in-treatment. She remembered Rebekah and Sarah and treated us well. The surgical doc that sewed her up was pretty cool. Rebekah kept screaming that she wanted to go "bye bye bed" (which means to have transport come take her in the hospital bed) to the 3rd floor (where we used to stay) so she could spend the night. She kept asking, nay demanding, for "tubes" (an IV) to be placed in her hand so she could stay. She threw an absolute fit when she found out we were not staying and had to come home. The nurses that didn't know her all got a kick out of this little girl who was screaming and crying to STAY in the hospital.

And now this morning she is looking forward to going to church to show off her stitches. What a trooper.

Blogging from the phone - a first! We are at the boo boo hospital emergency room. Rebekah fell and has a pretty serious cut on her forehead. More later.

Happy Anniversary

Mommy and I are celebrating our 18th anniversary today. I usually don't write from my perspective but I do just want to take the chance to thank mommy for being such a wonderful mother and a wonderful wife. After all we have been through I wouldn't change any of it for the world. I cannot imagine going through it with anyone but her.

Many couples do not survive some of the trials we have been through and I praise God and thank you all for all of your prayers that we are still so much in love and looking forward to many many more wonderful years.

-Scott (Rebekah's Daddy)

PS. YES - 2 posts in one day. I know that is a record for us lately. For those of you who are purists, the past couple of posts were not directly about Rebekah so I apologize for that...

Julia Update

Thank you Darlene for the very nice comment and verse. We have never really looked at that verse in that way. God is good.

Julia's initial surgery went well. They didn't take quite as long as they thought they would. The rough "wet smear" test during the surgery gave great hopes that the tumor was not cancerous but they won't know for sure until today. Prayers in this area would be great.

The best update is what came from Julia's mommy last night (Sunday) evening:

They discharged Julia from the hospital at 9pm tonight. Praise God!! Overall, she’s done really well. We were originally expecting a minimum of one week and were told to prepare for two weeks in the hospital. We’re very thankful that things went much better then expected. Some friends that have been through much more in the medical realm with their daughter helped us a great deal and even loaned us a mini tape recorder. I see now why this is so beneficial. It is amazing that we can sit with the doctors and afterwards are unsure of what they said. It’s helpful to be able to go back and re-listen to what was said directly after surgery or doctor’s visits.


Apparently, the surgeons thought (if they took part of the kidney) they would need to put a stint in that would have to be surgically removed at a later date. This stint would need to be monitored in the hospital. When they went to do the surgery, everything was lined up properly (position of the growth, position of veins, etc), that they did not need to put in the stint. This made the recovery and the overall procedure much easier then expected. Even after the surgery, we were continually given conflicting opinions from doctors and nurses on when she would go home from a couple of days to “oh, she’ll be here for a long time”. I think they really don’t know how long the recovery will last since each person is different.

Please continue to keep Julia in your prayers regarding the results and her continued recovery. She’s still in quite a bit of pain. We were also told by one of the surgeons that they made a really small incision. Apparently he often makes incisions twice as big. We thought that was good until we actually saw the incision. Wow!! I’d hate to see his “really big” incision. Her incision is at least 6 inches long. It’s a small price to pay under the circumstances though!


Thank you for all of your support and prayers. We feel tremendously blessed by all of you! We should find out the pathology results tomorrow. I’ll send out another update tomorrow or Tuesday.

Thank you very much for your continued prayers for us and for Julia. Yet again we have seen how prayers and God's will can change what appears to be a very bad situation into something far better.

Life Goes Full Circle

Oh the thoughts and memories that are flooding back. Some close friends of ours are driving their motorhome to the hospital right now. Their 11 year old daughter has a tumor that they believe to be cancerous and she is undergoing her first surgery tomorrow morning at 6am.

She (mom) first called us a few days and you could tell on the phone that something was wrong as her voice was empty - not her normal strong powerful self. We knew right away without her saying what it was. Don't know how, but we did.

In trying to help them through these first days/weeks we are experiencing a flood of memories and emotions. In many ways it is like we are going with them. Just trying to help them with some logistics of where they can park their motorhome at the hospital tonight brought daddy to speechless tears. Of course we wouldn't have it any other way and will be there for them throughout this event in their lives like so many of you were for us; nobody can do this alone.

PLEASE share a moment of prayer with your family and with God, asking that Julia, Linda and Ron (and all of their family) receive strength and the support that they need from God and His servants. Pray for a miracle to reveal itself in tomorrow's surgery.

And hug your little one's just a little bit longer because you never know what tomorrow will bring.

No Evidence of Disease

No Evidence of Disease. Those are always wonderful words to hear. And this week was no exception to that. It is always good to hear that there are no signs of cancer. We continue to run the risk of Rebekah's cancer returning, but for now it has not and for that we are thankful.

We continue to work with Oncology, Pediatrician, Endocrinology with Rebekah's Hormone issues (specifically thyroid and growth hormones), ENT (Ear Nose & Throat), Eye Doctor, Developmental Pediatrician, and Psychologist (Behavior Therapy) not to mention the therapies Rebekah receives at school. It keeps us busy.

We were able to start Growth Hormone Shots last Thursday. Although we don't use the word shot or poke around her. We call it her Grow Tall Medicine. And she calls it her Grow Tall BooBoo Medicine. With her device (called Easypod), she does not see the needle. She has been a trooper through all of it. She has taken ownership of it and gets the medicine out of the refrigerator, picks where the medicine will go (it can go anywhere there is some fat - just like insulin - arms, legs, belly, etc...), cleans the area with an alcohol wipe and helps push the button to "get" the medicine. She says "owe" and flinches, but doesn't cry and doesn't avoid it. We are very proud of her! After giving her the first dose (which we do at bedtime), she woke up in the morning asking if she was taller. She says she wants to grow as tall as Mommy. She is proud of herself for growing taller. She says "my taller now" as she stretches herself out. We need to get a growth chart, so we can track it and she can see it.

We are still working on the details of paying for the growth hormone shots. It has been a busy couple of weeks for us, so we haven't made much progress. One step at a time...

I've posted twice tonight, so be sure to check out the previous post, too! It will make you think.

Sibling Empathy

I have mentioned before that I am on a list for people affected by Ewing's Sarcoma. This week, I received the messsage below from one of the other moms on the list. With her permission, I am posting it here. I hope that it will get you thinking.

Her daughter Delaney's tumor was located in similar areas to Rebekah's and her treatment was also similar to Rebekah's. As I read the post, it brought tears to my eyes. I can see Sarah being much like Joshua as she grows older. It breaks my heart that Delaney and Joshua have to go through situations like this, especially knowing that my children may have similar situations in their future. It also reminds me how much siblings of cancer kiddos and special needs kiddos are affected by the cancer and/or special needs.

My eleven year old son, Joshua – has empathy beyond his years.

He has become the “older” brother to 13yo Delaney and worries about the fact she does not have friends her age. That being coupled with the fact she prefers to spend time with the elementary school kids – who don’t tease her – had him quite upset the other day. So upset, in fact, that the boy who does everything possible to get out of homework – especially writing assignments – crafted a letter that was later returned to me with an apology by two of the fathers up the street. Apparently, when Laney became upset because of a perceived unfairness in the game that was being played, one of the wives/moms said to her in front of Joshua: “Delaney, you need to go home. You can’t come down here all old and bald and cry. It’s weird.”

“My sister Delaney was diagnosed with cancer in June 2002. That was the darkest time for my family. So dark that my dad left my family. The reason that I’m telling you this is because I’m not trying to be mean but I think something is wrong. On Thursday, she came home crying because Maddi said she wasn’t allowed to play with Delaney. I’m just saying that is messed up. On Friday, she RAN home crying and Delaney NEVER runs.

Both of those days I was weak and couldn’t do what I was thinking – cry and say “Stop it!” But instead, I just stud [sic] there. On Thursday night I cried for about five minutes saying “Why didn’t I stick up for her?” Again, I think something is going on. Delaney is really nice but she has brain damage to her frontal lobe. That makes her emotional but super smart. She just doesn’t have any friends besides the girls down their [sic]. I thought a nurse like Monica would understand.

Respectfully, your neighbor,

Josh P. Diggs

PS I think Delaney won’t be coming down anymore.”

That one, brought me to tears. His insight and empathy were more than I could bear.

But the letter? I’ll keep it until the day I die. The most worrisome thing about Delaney’s illness and late effects is wondering how she will be cared for when I’m no longer here. I don’t think I need to worry, do you?

Peace…

Renée

Off to the Hospital Tuesday Morning...

It is scan time again, and Rebekah has her MRI scheduled for tomorrow (Tuesday) morning. So we will be up early and out to the hospital on a "skip breakfast" day. We'll all skip with her. We were hoping to get the Panorex and Chest XRay done beforehand, but it doesn't look like we'll have time. We'll have to find another time to make that happen.

We will meet with the doctor next Tuesday for results. Meanwhile, I'll try to get some preliminary results the end of the week.

Last month, we did some testing to see whether Rebekah's body is able to create growth hormone. It is not. So she will need to have growth hormone shots. We've been working with the endocrinology office and a "bridge" company that works with the manufacturer of the growth hormone shots to get insurance to cover them or to get assistance from the manufacturer to help pay the bill. The shots cost $2800 per month. Ouch! Our insurance specifically excludes growth hormone shots. The "bridge" company doesn't pursue insurance if there is a specific exclusion. We'll have to see what we can do personally, if anything, to get insurance to pay for it. Meanwhile they are sending an application for "patient assistance" to help cover or completely cover the cost. One step at a time...

Meanwhile, they sent a month's supply and the "device" at no charge, so that we can get started on it. It arrived late last week. Now we need to get some training on it, so that we can start them. The nurse is scheduled to come out Thursday afternoon to train us on it. We need to make sure that there is no evidence of active cancer before we proceed with the shots. Therefore, I want to get preliminary results on the scans, so that we know whether we should be starting the growth hormone shots or not.

Rebekah has been taking a synthetic thyroid medication for two months now because her thyroid isn't functioning properly. The cancer treatment hasn't definitely taken a toll on her. These (growth hormone and thyroid) are just two more ways that we need to deal with.

Sorry it has been so long since we posted. Life has been pretty hectic. I'll try to fill you in a little on what has been going on in our lives...

We took a little extra time off at Spring Break and enjoyed some time in Sunriver thanks to Mommy Debbie and her family. We invited some friends along and we all enjoyed the time.

Then during spring break and the week after, we all got sick. It made for a very long time away from school for the girls.

We've been working with a Behavior Therapist and have been making some progress. We have started a reward chart for "good behavior" with some grab bag prizes. Both girls have a chart. They can each get a stamp or sticker on their chart for having a good meal time (finishing what is on their plate within 30 minutes without fussing) and getting ready and going to bed well (helping mom or dad brush/floss teeth, get jammies on and get medicines and then go to bed nicely without fusses or getting out of bed unneccessarily). Rebekah can get a stamp/sticker for doing her eye patch for 2 hours without complaining or trying to take it off. Sarah can get a stamp/sticker for letting mommy change her earrings without complaining (she still doesn't like me to even touch her earrings).

Rebekah is doing really well with her pierced ears. We are changing them regularly now and she likes to put different ones in. It isn't always easy, but she doesn't fuss much about it and gets excited about the possibility of a change.

Sarah, on the other hand, does not want her ears touched. It is almost impossible to clean them, much less take them out and replace them. She pushes my hands away if I get anywhere near her ears, bends her ears down to her shoulder and shrugs her shoulders up toward the ears - all making it difficult to even get to her ears.

Because Sarah's birthday is the middle of September, she just misses the September 1 date for Kindergarten. We spent a lot of time looking at what it would take to get her into Kindergarten this year (before she is due). Academically, she is ready and we could see that. The other piece to readiness is social and emotional. We thought she was ready, but her preschool teacher did some testing and found that she wasn't quite ready when it came to the social and emotional side. So we've decided to keep her in preschool one more year and let her be one of the oldest in her class.

She really enjoys preschool and she will have the same teacher next year, so I know that will be great for her.

Rebekah has some nights where she wakes up dry. We are praising her big time for those days. Her teachers will give her high fives too. Waiting for the day when we can be done with pullups for good. It is in sight, just not here yet.

Please pray for Gage and his family. They are trying to treat another recurrance and things are not looking too good. His family could really use a lot of prayer right now. They are getting second and third opinions, but not holding out much hope for a cure. My heart breaks for them.

Scan Results - And A Lot More

Ok, results are in. We met with doc last Thursday to go over some things. The GREAT news is that at 3 years out there is no sign of the cancer. There still are some weird things showing up but they aren't changing which is good. Most of the other tests showed that things were coming along okay.

We say "most" because there are a couple areas of concern. One is growth. Although Rebekah's bone age testing shows that her bone age/density is progressing as it should (at least in the non-radiation affected areas) she is falling off the bottom of the growth chart. Or in other words she is not getting any taller. There is some concern here about the need for growth and/or some other hormones. The radiation field included her pituitary gland, thyroid gland and some potential others. We know the thyroid is not working right for sure. Without us actually seeing them (but them having seen the test results and talked with the oncologists) the endocrinologist proscribed some growth hormone. We believe there is a need for a further more detailed look at her endocrinology system and are pushing for a full exam by them before we just start on hormones that might only be part of the solution, if even that.

In addition we are having more and more behavior issues. These are likely related to the brain damage from the radiation. We have been trying long and hard to get in to see a highly recommended psychologist and were recently able to do so. Only problem is that they are not, unlike what we were originally told, an "in network" provider for our insurance company. That means that 2x/month visits could cost us close to $300-400/month after insurance pays! We want to move ahead with this doc and will have to pay for the initial exam mostly out of our pocket. We can only pray and hope that this is the right fit and that some options come up from there.

Finally we want to update you a little with family dynamics and sisters being sisters. Even though she is the little sister almost 3 years younger, Sarah is outpacing Rebekah in just about every area. Heck, she is almost as big as Rebekah! Last week as we were getting ready for bed Sarah said to Rebekah "You are stupid..." Daddy instantly pulled Sarah out of the room to have a talk with her. During that conversation she told him that "Rebekah is stupid because she doesn't talk right." It was very difficult for daddy to hear from little Sarah. This was the very first time we have seen any indication from Sarah about anything negative towards Rebekah's condition at all. We had a long talk with Sarah and think she understands how different people are different and that doesn't make them stupid; how it is unacceptable to call anyone stupid; and how Rebekah is this way because of what mommy and daddy had to do to her to keep her alive. It was quite emotional.

Prayers for continued blessings and for God to work His hands through both the endocrinologists as well as the psychiatrists situations.

At The Hospital - 3 Years Out

Yes, it has been a LONG time since we updated. There is lots to tell you about but for right now we wanted to put up a quick post saying we are back at the hospital today for an anesthetic, MRI, CT, blood tests, etc.

Valentines day was 3 years from the end of treatment. A wonderful Valentines treat.

Hopefully we will update you soon with the current status of everything. For now please pray for clear scans and not too much of an emotional up and down for the family as this process is known to do. Please also pray for Gauge and Joshie who are not necessarily doing as well as Rebekah is physically at this 3 year point.

Merry Christmas

We feel blessed this year. We have so very much to be thankful for. We are together and will be able to be with family over the next few days. It has been over a year since the house fire and we are getting back to "normal".

We were able to get Rebekah's Tango ordered and it arrived in time for Rebekah to open it up at her birthday party. Her eyes got really big and she said "My Tango" when she saw the box. She opened the box, turned it on and started using it (well using it might be a stretch). We weren't sure if she would remember how it worked or not, but she certainly can get around on it. She still needs help to work with it and truly make it "her" voice. We have applied to several grants to pay for the remainder and haven't heard back, yet, so please pray that the funding comes through for us.

All week last week, both girls were off school due to snow days. We have had about 3 feet of snow fall at our house (and some freezing rain) in the last week and a half and very cold weather. The low on our thermometer was 9 degrees F one night. We still have about two feet of snow on the ground. It is a winter wonderland. They are expecting more snow tomorrow. This is not typical weather for here, so it has made travel difficult.

We hope you all have a safe and merry Christmas! May God's love surround you this holiday season and may you remember that Jesus is the reason for the season. We are thankful for all that God has done for us (much of it through you) and we hope that you are able to reflect on all that he has done for you. God Bless You.

Enjoying a Break At Sunriver

Once again we have been very specially treated to a short trip away to an elegant vacation home in a little resort called Sunriver, about 4 hours from our house. Daddy had to come over here for a court hearing and we checked to see if this home was again available and sure enough it was.

Mommy Debbie and Daddy Brian (titles earned and adorned by taking care of Sarah for so many long months while Rebekah was in the hospital) have this beautiful home that they have repeatedly been willing to share with us. We try and do a little bit of cleaning up, working around the place, etc. to help "pay" for our keep but nothing could even approach the value of the gift of family time and relaxation that they have given to us. There is a picture of them together here and when the girls go by it they say what we are thinking: THANK YOU MOMMY DEBBIE AND DADDY BRIAN.

One of the "retreat" things they have here are lots and LOTS of bicycles. They even have one small one with training wheels on it so we took the opportunity to see how the girls would do with it. They have tried tricycles and big wheels before, but where we live there is very little pavement so practicing doesn't work too well.

Here is what we ended up with for Sarah (sorry for video from the cell phone, that is all we had):


Of course this is a very proud day for Mommy and Daddy to have their little girl on a bicycle on her own. Admittedly it is bittersweet as Rebekah could not do it. We worked with her for a long time today and she just doesn't have the coordination or strength to be able to peddle. This is true no matter how much we practiced with her, tried to do her feet with her/for her to help her to learn etc. We still have some high hopes that with a lot of therapy it might be something she can learn and we know that this is just one of those times that Rebekah is sharing with us that she is not going to be like "all other kids."

She really DOES like playing on the bikes/trikes, however. Even though it is too small for her she loved being on the tricycle and walking it around with her feet on the ground. And of course, anytime there are two "vehicles" in close proximity to each other there is going to be a crash:


And finally, you know it had to be coming... Yes, there was one really "good" crash for the day (can you tell Daddy is writing this post?):


But don't worry, Sarah came up the better for it and laughs when she watches this. Daddy would not let her quit right after this happened - got to get back on that "horse" or you never will.

While we were over here we also had some more conversations with the Tango people but the details of that will have to wait - but please keep this lifted up in prayer!

Good News!

This past week has been full of good news. We found out Sunday evening (while looking at Saturday's mail) that insurance is going to help pay for the Tango - Rebekah's speech device. They will pay somewhere between $4,000 and $5,000 for the device. The device costs just over $7,000, so we'll need to figure out how to pay for the other $2,000-3,000. We're looking at our options.

Rebekah had her scans on Tuesday. We called clinic Wednesday for preliminary results and spoke with the nurse. She read and then faxed the radiology reports. The short story is that there are no signs of cancer, but there is continued (and even worsened) evidence of sinusitis. We will follow up with the Oncologist Thanksgiving week after tumor board has met to look at the scans, so we'll know more then.

Rebekah saw the eye doctor Thursday. Her eye is looking better. Doc did not see signs of dry eye, like we had two weeks ago. We are speculating that the issues of two weeks ago are probably related to dry eye. We need to continue to use gel and drops, but not as much as we have been. Mostly for symptoms.

Doc wanted to know if Rebekah was complaining about her eye - did she feel something was wrong. At least at the worst of it, she did complain and was rubbing it like it was bothering her. Doc said it was difficult to know, after radiation, how much feeling she might have. So the good news here, is that she seems to at least have some feeling.

Sarah has not had any screaming leg pains in more than two weeks now. I'm still waiting for it to come back, but thankful that it hasn't yet.

Rebekah was invited to one of her classmate's birthday party Friday night. It was a bowling party. Rebekah went and had some fun socializing with her friends, but she didn't want to stay for much of it. It was good to see the kids interacting with her. We met Grandma C at the Bowling alley before the party and sent Sarah home with her. When Rebekah was done with the party, Mommy & Rebekah headed to Grandma C & Grandpa's and the girls got to spend the night. They had lots of fun.

Leg Pain, Eye Trouble, Scans, Caitlin

We have had an interesting couple of weeks. Two weeks ago, Sarah started to complain about her legs hurting. For about a week, some time during the day she would stop, scream in pain and refuse to go on. Some days it was morning and others it was afternoon. She didn't complain at school and her only complaints were to mom. A few minutes after her complaint, she was acting fine and running around like normal. At first, I thought maybe she was suffering from "growing pains", but after searching online her symptoms didn't match the typical growing pains symptoms. Other possibilities that came to mind were bone tumor, bone marrow issues like leukemia or lymphoma, juvenile rheumatoid arthritis, etc...

After a week of complaints, we decided that she needed to be seen by the doctor and since her doc wasn't available scheduled her with another pediatrician in the office. This was a week ago Friday. The physical exam was "normal" which is a good thing. We were given the option of running some additional tests - bloodwork and/or xrays of the legs. We decided that it made sense to do both. We got the bloodwork back the same day and it all looked fine. We had to wait until Monday for results of the xrays and they looked fine as well. So it is hard to know what was going on. The good news, though, is that she hasn't complained since Saturday the 25th. It seems that whatever was causing the problems may have resolved itself. At least that is what we are thinking right now. If the symptoms return, we'll have to look at further testing.

Mommy is on an email list of people affected by Ewing's Sarcoma. When she posted some of the details about Sarah's complaints, several people wrote back saying that those symptoms were similar to their child/grandchild who had a tumor on their spine. So that is something we will have to think about, too.

At the same time, Rebekah's left eye (the one that had the cataract surgery back in March) was getting red, irritated, having more discharge, and then became tender. When it started getting red, we started using more drops and gel. That didn't solve the issues. We called the doc and basically got the keep an eye on it, keep up with the drops & gel and call back if it gets worse. Well it got worse, so I called last Tuesday to schedule an appointment. Her doc wasn't in on Tuesday, but we were able to get her fit in on Wednesday.

About 2pm Tuesday, we got a call from one of the technicians asking more questions. She checked with one of the other docs and decided that Rebekah should be seen Tuesday and not wait until the next day. So I picked Rebekah up early from school and we headed into the eye doctor with Sarah in tow. Doc didn't find any "serious" problems, but the eye was definitely dry. She didn't see any infection, but gave a prescription for an antibiotic eye drop just in case (4 times per day for 1 week). And suggested that we put eye drops in the eye every 2 hours with gel at night and even before heading off to school. So we've been doing that and it does seem to be improving.

Rebekah will probably have to deal with dry eye issues for the rest of her life. She often has severe issues. The gland that produces tears for the left eye has been damaged and probably doesn't produce the tears that it should. The tear duct on the left eye that should carry tears away is constricted and leads to nowhere because the ducting has been destroyed by the radiation she received. This means that tears often run down Rebekah's cheek. She looks like she's crying, but it is the only way that her eye has to get rid of the tears.

November is Scan month. We have Rebekah's MRI Scheduled for Veteran's Day - Tuesday the 11th. Doc has been pushing to move away from doing Chest CT's every time and we have agreed to do a Chest Xray instead of the CT this time. So some time, we need to get her in for a Chest Xray and the Panorex (picture of teeth). We might take her in early on the 11th and try to get them done then.

Meanwhile, it means that anxiety is a little higher than normal. Some of Mommy's Ewing's friends call it scanxiety. In reality, what is is and no amount of worry will change it. So, please pray for us as we wait. It doesn't help to be dealing with eye issues and leg pains in the meanwhile...

Last, but certainly not least, please pray for Caitlin and her family. Caitlin is a 4 year old little girl who was just diagnosed with Leukemia (ALL). While we don't know her family personally, Caitlin attends preschool at the church where Mommy & Daddy were married and that we still consider a home church. While we don't attend there regularly, we do keep in touch and receive prayer chain emails. Our prayers go out to her and her family. This is never an easy road.

Rebekah Loses a Tooth

Rebekah lost her first baby tooth yesterday. Six months ago, the dentist told us she had one slightly loose tooth. I’ve been watching that one very carefully. This one was not one of the very front teeth, but rather the one just to the right on the bottom. She has been talking about “my loose tooth” for months now, but the last week had been bringing it up a lot at dinner time. I thought maybe she was trying to get away from eating and didn’t give it a lot of thought. Tuesday night, as I was brushing her teeth, I noticed that she definitely had a loose tooth – and it was very loose. We put a note in Rebekah’s Home-School notebook, so her aids would know about it. When she got off the bus on Wednesday afternoon, she had a “tooth” necklace with her tooth inside it. During morning snack, it came out. Rebekah said her leg caught it. She is very proud of her missing tooth (although she still calls it her loose tooth). She has to look in a mirror any time she passes one to look at it.

We had conferences today and her special ed teacher said that she was sitting right next to Rebekah when her tooth came out. Rebekah matter-of-factly told the group that her loose tooth fell out. She wasn’t upset about it, didn’t panic about any blood (and there really wasn’t much) and was just fine with the whole thing. I’m glad to hear that she didn’t panic or fret about it. We had been talking about it, but I’m never sure if I’ve talked about it enough to take the mystery out of it.

Conferences went well. She is doing pretty well. Her first grade class is getting used to having Rebekah there some of the time and not other times. They have a reading time, where they each need to be by themselves reading and then after a few minutes of that they can partner up and read together. Rebekah picks one of the girls in the class for her partner and the girls are really good about accepting it. Sometimes they will chat and other times Rebekah will ask them to read to her. The class will often say “goodbye” to Rebekah when she leaves the classroom.

She has a friend Matthew in her special ed classroom. It sounds like they play off each other. Teacher says that one of them will show that they are doing what they are supposed to do and then the other will do what they are supposed to do. So far, they aren't feeding off each other in the "bad" habits.

Math is one of her strengths. She has the concepts down. She is recognizing numbers and can count to twenty (on a good day anyway). Her classmates are understanding more and more of what she is saying. She struggles with spelling and reading.

Rebekah showed us to both of her classrooms and showed Sarah where all the “fun” stuff was in her special ed classroom, where they played while we met with the teachers.

Rebekah was off of school last week – Wednesday, Thursday & Friday (teacher inservice & grading days) and off this week Thursday & Friday (for conferences). Last Friday, Mommy asked Rebekah what she wanted to do that was “special” with just Mommy (since Sarah was in school). She wanted to bake cookies and given the choice between chocolate chip or sugar cookies & using a cookie cutter, she chose cookie cutter. So we made sugar cookies – leaves, pumpkins & stars. Then we made some red & orange frosting and frosted them and added sprinkles. She made some special ones for Daddy & Sarah.

It was strange having Rebekah home and Sarah gone at school. It has been such a long time, since I’ve had just Rebekah home and not because of some sort of medical procedure.

Sarah is loving school. She is making friends and gets excited about going to school. She was very upset Monday when she found out that school was cancelled for the day because of a water main break. She told me “I am very sad because I can’t go to school.” It was heart-breaking. She is not happy that she doesn’t get to ride the bus every day. She does get to ride the bus on her speech class day. The bus picks her up at home and then takes her to preschool.

Sarah started up speech therapy again this week. She is enjoying that, too. She came home after the first session (with a new therapist) and wanted to draw a picture for her. Her picture had Flounder (the fish from Ariel – the Little Mermaid) and Flounder’s mommy. Today, we took that picture with us to therapy (session #2) and her therapist put it up on the wall.

Getting Used to the School Routine

We are getting used to the new school routine. Both girls are pretty tired by the end of the school day. Dinner time has been moved a little earlier so the girls can get to bed sooner.

Rebekah spends part of her school day in the first grade classroom and part of the day in the special ed classroom with 3 kindergarteners. She does a good job of listening. She has an occasional outburst, but seems to be much better than last year. Some of it is probably due to her being more mature and some may be because of her medication. She can be very compasionate, helping the kinders come to circle when it is time or waiting patiently while they make their way. She gets to be in her first grade class at the beginning of the day for greeting time and learn about what is happening for the day. She has music, pe and library as well as lunch and recess with her first grade class, too. She is also in an adaptive PE class where she focuses on the skills that the physical therapist wants her to work on. She does some academics in the special ed class and some in the first grade class. It seems to be working well for her.

Rebekah came home the other day with a picture that her friend had drawn for her. It showed her and her friend. It was drawn that day, because in the picture Rebekah was wearing the shirt she wore that day. It was interesting to me that her friend had drawn Rebekah's hair shorter on the left side than on the right (which is accurate). It reminds me how observant kids her age can be.



Our insurance company denied coverage for the Tango - the speech generating device. Their policy specifically excludes them. We are working on putting together an appeal. We don't know if that will work, or not, but we are going to give it a shot. We may have to look at other funding possibilities if this doesn't work. So, please continue to keep this in your prayers.

Sarah enjoys school. She goes three full days - Monday, Wednesday and Friday. She has her special speech class on Wednesday mornings, so she misses the first hour and a half of preschool. She is at a christian school, so she is learning more about God, too, which is great. She comes home singing new songs she has learned and talking (if we can get her to) about things she learned. Most of the time she tells me she can't remember what she learned. But then, she's my girl that when I asked her who taught her something she tells me "I just always knew it." She has a boy in her class that is seriously allergic to peanuts, so they have asked to make the classroom nut free. So no peanut better and jelly sandwiches at school. She will have to have those on "stay home" days.

Sarah celebrated her birthday a week and a half ago. She turned 4. Her birthday was on a Wednesday, so she got to take treats to both her speech class and preschool. She was very excited. We celebrated her birthday with family last weekend. She decided that she wanted a castle birthday cake, so Mommy made her a castle birthday cake. And we had Cinderella plates and napkins, so it was a "princess" party. She had a great time and got some clothes for school and some "princess" towels and books, among other things.



Shortly after Rebekah comes home from school, she needs to wear her eye patch for two hours. She usually grumbles about it, but it has to be done. The last few days, she has been doing much better about it.

We were able to get Rebekah started back on Horse Therapy riding. She started again this past Tuesday. Once a week, she will get to do that. She seemed to enjoy it and was able to do many of the things she had been doing in December when we stopped. This week, she will ride a different horse. The horse she has been riding (Butter) will follow the instructor regardless of how Rebekah steers. The new horse will follow Rebekah's lead more, so Rebekah will have to work harder to keep the horse doing what she wants. It will be interesting to see how she does.

The girls wanted a clock in their room, so we got a clock that projects the time onto the ceiling. We've been working with them on telling time (at least what hour it is). On school days, they get up when the first number is a 6 and if it isn't a school day the first number needs to be a 7 or an 8. We are also working on AM vs PM. It is also an alarm clock and they decided that they wanted the alarm to wake them up instead of Mommy. It is really funny to hear them on a Saturday morning at 6:45 or so talking to each other and saying "the first number isn't a 7, so it isn't time to get up". Other days, I can hear Sarah saying "it has been 6 a long, long time". Then, she'll come out of the room at 6:59 to go potty and tell mommy "it isn't a 7, yet, but I need to go potty". Yesterday, however, they woke up around 5:50. They weren't able to stay in their bedroom for too long and they weren't about to go back to sleep. Today, I had to wake them up a little after 8, so we could get up and ready for church. Some days they wake up early and surprise me because I thought the needed more sleep and other days they sleep in and I figured they would be up early.