A week of Appointments...

This week was crazy with appointments. It started on Tuesday with Savannah seeing the cardiologist. That was a good appointment, all is still stable as far as her heart goes. They said the high blood pressure and tachycardia are related to anxiety more than anything else.

Wednesday was crazy. Caroline has speech and the other two kids had psychiatrist appointments. There were a few adjustments made to their medications, but nothing major. They agreed that Savannah was getting increasingly anxious. However, she does have to deal with more medical stuff than most adults, so that is no surprise. Caroline also had an appointment with her 1:1 preschool teacher.

Thursday I had an appointment to talk about Savannah's speech this year. Savannah and Ian also had OT. Savannah is getting speech 2x week this year rather than 1 like last year.

Friday was Caroline's first neurology appointment. She does have NF1. We will be scheduling her an MRI as soon as the hospital calls. They are also going to get her an eye appointment, as he wants the eye doctors to get a better look at her optic nerves. I may switch neurologists though..the office staff where we go is terrible and it is so hard to get appointments. I'll wait till after the MRI to decide for sure.

I am hoping for a nice calm family weekend. I would hope for calm weeks, but it does not look like that will happen anytime soon. As of now we have standing appointments 3 out of 5 days and that is looking to increase to at least 4/5 soon. Then I still have to add in the monthly appointments and the extra appointments on top of that.

Right now I am just thankful they are as healthy as they are. It could always be worse, a lot worse.

Menu Planning

In an attempt to be more organized, I am once again going to try menu planning. This time though I am keeping it simple and doing it a week at a time. Last time I attempted the month at a time thing, and it just really did not work.

I will blog about it, so maybe it will hold me more accountable. Starting next week (since it is a new month) I will see if it does save me money on the gorcery bill (I will be using coupons as well. I am only doing suppers. Lunch will be leftovers, etc.

This is the plan for this week:

Mon 8/22 - Beef tips with gravy, white rice, salad

Tue 8/23 - BBQ chicken breast, mashed potatoes, corn

Wed 8/24 - Lemon pepper pork chops, mac and cheese (just noodles for my husband who has texture issues with mac and cheese), green beans

Thu 8/25 - Crock pot beef, potatoes, carrots

Fri 8/26 - Papa Murphy's Pizza (Pizza and a Movie In Fridays!!!!)

Sat 8/27 - Tacos, beans, rice (white rice with salsa)

Sun 8/28 - Spaghetti and meat sauce, garlic bread, salad

Savannah's 1st Day of Second Grade and Early Parent/Teacher Conference

First Day of School

Somehow, that tiny little baby I held back in the Summer of 2004, my first child, is now in second grade. That just seems so big to me. It just amazes me that she is this old. People who told me it would fly by are right..it has flown by. She is growing into such a wonderful young lady..I am proud of her, but sometimes I miss that tiny baby that did not seem to know babies are supposed to sleep (well, that is one thing that has not changed - she still thinks sleep is highly overrated).

She attends a local private Christian school. We really love it there. There are small class sizes and the teachers are all great. Also, I love the focus the school puts on Christian living. I am so happy she is able to have this "extra" instruction. I feel safe leaving her there. I never really did when I left her at a public school (not that there is anything wrong with public school usually - that is just a long story).

Here are some pictures of her in her uniform on the first day of school:








Parent/Teacher Conference

On the 3rd day of school I had a conference with her teacher. I would have requested one anyway, but the school decided to have teachers have Week 1/2 conferences with all the parents in order for the teachers to get a better basic understanding of the kids in their class. I think that is such a wonderful idea!

This is what I found out about Savannah:

Her math skills are off the chart. She is very good at math.

Her reading level test was not finished, but she was already at the 3rd grade level and still climbing. This means she has passed the A to Z leveled readers and will be doing chapter books instead.

Her comprehension skills are also testing high.

Her weak areas are spelling and handwriting. We will work on these. I was always good at spelling. I was one of the first kids picked if you were having a team spelling contest in school, but my husband said spelling was one of his weaker subjects (meaning yeah sometimes he missed ONE). That is okay though..spelling we can work on. She is still around 50%, so it is not like she just CANNOT do it. Handwriting she may always struggle with. People with NF1 often have trouble with their handwriting (this will be mentioned in more than one of the links I will have at the end of this section of the post). I think she can do it if she puts her mind to it.


I also made 2 packets about Savannah. I gave one to the office and one to her teacher. I collected and wrote some information about Savannah and put it in a 3 prong folder with dividers. I also included a calendar of all the days she would miss due to treatments, therapies, and doctors appointments this month. I will send a new calendar every month.

1st Section - Information I wrote about Savannah - her likes and dislikes, things that work and things that do not as far as discipline goes, her reactions to certain stimuli, things to monitor in regards to the mass in her brain, etc.

2nd Section - NF1 information

Educating the NF Child

About NF

About NF1


Third Section Information about ADHD

ADHD Education

Educating the child with ADHD

Fourth Section Information about Sensory Processing Disorder

Sensory Processing Disorder

Educating the Child with SPD


Fifth Section

This was just a section on all the medications she is taking plus a print out on what they are,possible side effects, and what sudden side effects warrant immediate attention.


Outlook for the Year

I have a very positive outlook for this year. The teacher is very hands on and Savannah loves that and will thrive in that environment. I think as far as school goes this will be a great year! I just pray that her health holds out and she is able to enjoy the year fully!

A few Pictures from St Jude

When we were at St Jude I was very nervous, so there are not a lot of pictures. I will take more the next time.

It is really a wonderful place. They are so good to the children and the families. Everywhere you turn there is someone wanting to give the kids something or play with them. They have people in all the waiting rooms doing craft projects with the kids or playing games with them. Every office they see has a treasure box. There are teenagers that come around with a cart called the "Happy Cart" and they give small gifts (like crayons and a coloring book) to the kids. They also have other things they give the children to make what even an adult would consider a "bad day" (full of tests and everyone being right in your face) a little bit (make that a lot) brighter. While she was there they had a "Pajama Party". All of the kids got a pillow case, a blanket, and a pair of pajamas(This was hosted by the teens I told you about earlier).

It really is a happy place, especially considering what all is going on there. I must say that you can really feel the presence of God there. He is watching over those precious children.


Here are some of the pictures:


Savannah doing a craft while she waits on an appointment:



Savannah waiting in a room for her doctor:



Waiting on another appointment, this time with the help of "Poodle Friend". We got it for her when we were told we needed to see a neuro oncologist. She was scared and this little friend helped her.




Savannah - "Poodle Friend and Hannah Montana stickers help me not be scared of the doctor..but I still do not like pokies (shots/needles/etc)."

School Shopping..

I wish I had thought to take pictures..but in the craziness I did not..and boy was it crazy. I bet there were 100 people just in the BTS section at Target.

Savannah picked out her new school supplies. They are all pink and purple. Daddy wishes she would do more neutral things..but I remind him that she is a girl. Little Girls often like pink and purple shiny glittery things. It makes them happy. Her favorite "score" of the day was a little bit of a splurge on my part. I got her one of these Hello Kitty thermoses:



It is on sale at Target for $12. I just thought after all she has been through lately I would let her have one. Her teacher is letting them keep water in spill proof containers on their desks, so this should work great. Out of fairness, Ian got a Star Wars Clone Wars one. They seem sturdy and should last through the abuse the kids are sure to put them through.

She is excited to get the school year started. There will be pictures of the 1st day of Second Grade!!!! (When did she get big enough to be in 2nd grade anyway?)

S's Story- Proof NF1 is not fun.

In early July S had an MRI scan of her brain performed. She was having headaches and intermittent periods where she seemed confused. In most children this is not one of the first things done, but S is a special case. She has a genetic disorder called neurofibromatosis type 1. I would explain all about NF1, but it would only make a long post longer. For those who want to read more about it, I will include a link..just click on the highlighted word.

A couple of weeks went by. I had tried calling the neurologist office, but no one called me back. I assumed that since I had not heard anything, all was okay. It was not. I got the call saying the doctor wanted me to come in the next day. J was away with his job, so I loaded all 3 kids in the car and went to see the doctor. He told me that he saw a "lump" in her brainstem. If she had NF2, this would be more of a normal finding. Since she has NF1 (yes after 4-5 generations we are sure it is NF1). He said he would put in a consult to a pediatric neurological oncologist. I chose a doctor at St Jude (after a lot of drama I do not feel like going into because it makes me mad whenever I think about it).

We loaded the kids into the car and headed to Memphis. Another MRI and a bunch of other tests were performed on S. All in all it took a little over a week of 4-5 appointments a day.

Here is what we know now. (For those who do not know/are not sure - S is 7 and will be starting 2nd grade on Monday)

1. There is a mass in her brainstem. It is in the brainstem and cervical spine. It is inoperable. It is way too involved with the brainstem and cervical nerves to even think about cutting on it. In fact, it would be hard if not impossible to even safely biopsy it.

2. She has NO gag reflex. She does cover the windpipe at this time, but she has NO gag reflex. The kid could stick something all the way down her throat and never gag. She has no sense of when her mouth is too full and therefore she is at high risk for choking.

3. Her deep tendon reflexes are extremely diminished, and in some areas absent.

4. The mass in her brainstem is probably what is causing the constant nausea, frequent vomiting for apparently no reason, frequent headaches, poor fine motor coordination, poor heartbeat regulation, lack of gag reflex, and extremely diminished deep tendon reflexes.

5. She was sent home at this time, because there have not been enough previous MRIs (even with NF it is hard sometimes to get insurance companies to cover those when kids are asymptomatic)to say that it is for sure cancer, although he cannot rule it out either. This means she will be getting MRIs every 3 months for the foreseeable future.

6. This is what I understand, I may be wrong: Because of the NF1, radiation is a last option only. In people without NF, radiation can be used to shrink masses, but if someone has NF radiation imposes other risks. People with NF are much more likely to get cancer than other people (and radiation can also cause cancer in addition to help cure it) and people with NF are more susceptible to the harsh side effects of radiation (especially in the growing brain of a child). She will also be more likely to suffer from the harsh side effects of chemo. It is for these reasons, they need to be SURE what we are dealing with in order to not make a bad situation worse.

7. Her heart rates are way up and she has had periods of hypertension (which I wonder if that is related as well). She is no longer on a stimulant medication for her ADHD, but this is still occurring. She is scheduled for an EKG and Echo on 8/23 here in Knoxville. She had one last year and it was noted that she did have some tachycardia and an abnormal rhythm. She also has a quadracuspicd aortic valve (this means her aortic valve has 3 leaflets rather than the 3 it is supposed to have). However, sometime in utero two of the leaflets fused so she functions as if she had a tricuspid (3 leaflet) valve. This was a good thing, because she would have had a lot of problems had this not happened. This is a VERY rare condition. I do not think the tachycardia and hypertension are related to it, but I worry how they will affect it.

8. We are going to treat the symptoms for now. This means the poor kid may be keeping the pharmaceutical companies in business for awhile!

9. We have to watch her closely. This means, making sure her breathing is normal, watching her heart rate and trying to keep her calm, cutting up her food like you would that of a toddler, and in general just watching her for any changes. This includes her handwriting as it can be affected.

10. We are going back to St Jude in early Nov for another MRI.

11. So basically, they DO NOT KNOW what it is exactly. It is a wait and see game. Anyone who knows me knows I am a control person and I do not like wait and see, but this is out of my hands for the most part. I just have to trust that God is guiding the doctors to do what is best for my precious little girl.

The docs at St Jude are all meeting today and they go over all the data collected on the patients. They talk about it with other experts (including neurologists and neurosurgeons) as well. They said they will call me tomorrow and let me know the findings.


St Jude is a wonderful place. They are so great with the kids. I could not imagine a better place for her to be getting this care.

I will post more updates as they come. Right now she is anxious, but happy. Just please pray for her, us, and the doctors involved in her care.