Good News and Not So Good News

Yes this is another medical update......

Landry is doing great - therapy has worked wonders for her. She really is a different child than she was a few months ago. Her PT said that she is an "ideal patient" and so fun to work with because she is responding so quickly to all of the therapy. Isn't it nice to be ideal! We are just so happy to see that all of the time, effort and money have been paying off. It truly is amazing and an answer to many prayers - Thank you God!!!

Landry was doing so well that I asked our pediatrician if we still needed to see the neurologist. He said he wanted me to keep the appointment that was just two days away and felt Landry still needed to be evaluated, even though we were seeing such great progress. In that moment my spirit was overcome with a knowing that we were about to revisit a place I did not want to go back to.

Six and a half years ago Matthew had a nasty playground collision with Blaine, the fastest kid in first grade. He got a big ol' concussion that required a trip to the ER and CT scan. The results showed that his brain was healing nicely from the concussion BUT it also revealed a tumor. I still remember how scared Pat and I were when we heard those words. My hands are shaking now just thinking about the emotions we felt that day.

After many doctors appointments, MRI's, blood work, etc. the conclusion was made that his tumor is most likely a lipoma. I say most likely because they can only be certain if they do a biopsy or remove it. Neither of which were good options because of the location in his head right behind his optic nerve. Anyway, if you are going to have a brain tumor, the lipoma is the one you want. It is filled with a fatty substance which does not put as much pressure on the surrounding brain tissue and may never cause any problems. Matthew is fine and has not had any symptoms or problems. Because of the location the neurosurgeon decided that after 4 years of yearly MRI's we were safe to monitor it was an in depth yearly eye exam. At the first sign of any visual disturbance Matthew will get another MRI to check on his "piece of fat" as we sometimes lovingly refer to his lipoma. It is kinda comforting to know that the bad location(surgery wise) is actually good when it comes to monitoring it.

Back to Landry.... The neuro we took her to see specializes in muscle and movement disorders. He thought her muscle tone looked really good compared to all of her initial evaluations. YEA! He does want to follow her progress for a while so we will go back in six months for a follow up evaluation. He ordered an MRI because two of her complex coordination issues including the swallowing disorder come from the same part of the brain. He didn't expect to find any problems but wanted to be sure.

The doctor told us we should expect to hear from his nurse with the MRI results within 2-3 days. I called on day 4 but they were already closed for the weekend. I called again on day 6 and finally the nurse called me back yesterday, which was a full week after the MRI. Seven days of waiting was hard. I love how God just kept me so busy that I did not have time to really dwell on it. I'd be telling stories if I didn't say that a few times "anxiousness" didn't try to set up camp in my heart and mind.

The good news is they did not find any "structural" abnormalities in the region of the brain that control the issues the doctor was checking out. This means the hypotonia is most likely the issue and that it is not being caused by some other underlying issue. The therapy she has responded so well to should stick so to speak and we should not expect to see any backsliding.

The not so good news, and the news I was somewhat expecting, was that they found something else. Landry has a cyst like tumor at the tip of her brain by or on (I'm a little fuzzy on the exact location) the Pituitary gland. It is rare which is why it took so long for us to get the MRI results - they had some extra sets of eyes look at her films. I was told that it may never cause a problem or that it could rear its ugly head sometime in the future. I was told that there is no need for surgery or even for any specific followup at this point. If symptoms show up then we should get it checked out. The symptoms could be widespread from headaches to visual problems to hormonal issues due to the proximity to the Pituitary gland.

I am trying to cling to the "it may never cause an issue" portion and I am thankful for so much. I am so well aware that we could have received much more devastating news but right now I just feel icky about the whole thing. I don't like it one bit. I don't know what to do with the information. Why did God help reveal these crazy tumors in Matthew and Landry? Do we need to know for some reason. Will they never cause an issue? I know God wants me to trust him with this and I am really trying and I will get there. Does trusting him mean forgetting that they have these? I like to rationalize and I like to know the reasons things happen. I know there are so many things that we will not understand this side of heaven but I really do want to know why about this. Even though I am feeling icky right now, in this moment, I am so very grateful that I serve a God who loves me and totally understands me and my need to rationalize.

Second to Last First Day

All three of my kids went back to school today. I have one in high school, one in middle school, none in intermediate school, none in elementary school and one in the young toddler room at preschool. It is really daycare but it makes me feel better to call it school and since it is my blog I will call it school here too.

All three - ready for school. I think this is the first time I have gotten a picture where all three of my peeps are looking at the camera and smiling.

I thought I would be misty-eyed dropping the baby off at school this morning but I had a 'moment' while driving Nicole to school. We were almost to her school when it dawned on me that this was her second to last first day of school and very likely the last time I would be taking her to her first day of school. How crazy is that. I remember taking her to her first day of kindergarten dressed in a cute pair of yellow skort overalls with flowers and a big white hair bow. I took her picture at home, in front of the school, with her teacher and at her desk. That has been exchanged for a low-key outfit with shiny black boat shoes, a brown lunch bag thrown into a big purse and a couple of quick pictures taken at home. And now I have just one more 1st day of school picture to take of my Nicole. Gasp!

Here is my no so little man, Matthew, looking a wee-bit anxious about his first day at the middle school. His mama is worried about Wednesday, the first day the boys in athletics have to shower before going to class after early morning football practice. Oh, the horror of being a boy.



I should have taken an "after" picture of Landry; she looked a little dis-shelved after her day at school. She napped on a cute little cot and enjoyed sitting in the little chairs at the table. She ate her snacks and her lunch but she only drank a few sips of water and milk. Needless to say, when we got home she was a bit parched and downed a cup of milk and a cup and a half of water while consuming a large number of goldfish. She then proceeded to have not 1 but 2 blowout diapers in the span of 2 hours. The second blowout happened at Target on the school supply aisle. I didn't realize how bad it was until Matthew got her out of the cart and said that he had poop all over his arm...YUCK and the baby had poop up to her neck...even YUCKIER! Why is it that these things only happen when you do not have a change of clothes? I was so thankful that I had just replenished the wipes in my Diapees&Wipees container.

Can you believe that such nastiness would come out of someone with such a sweet face?

Answers and more questions

Over the past several weeks we have been getting answers for some of Landry's little issues but come to find out all of these answers have led to more questions.

I have had concerns about Landry's development for a while. At first they were written off as delays due to her prematurity and struggles with respiratory issues at birth. I was fine with that. At her 9 month check-up our pediatrician told me it was time to be slightly concerned and by 10 months we were taking action. At first we had evaluations through our state's Early Childhood Intervention program (ECI). These evals showed a big ol' speech delay, sensory issues and a misbehaving eye that was not tracking in line with the other.

ECI began providing Occupational Therapy(OT) right away, had a child development specialist working with Landry on some speech and basic development but the Speech Therapist could not seem to get us on her schedule. I was really frustrated by this at the time but now I see it as a huge blessing.......more on this later. Landry's eyes were evaluated by a Pediatric Opthamologist who determined that the misbehaving eye was due to a muscle issue but it was not severe enough to do anything other than watch and re-evaluate in a year. I was relieved.

At Landry's 12 month check up her doctor was upset to hear that ECI had not started any speech therapy and he referred us to a private speech therapist. My longtime good friend Linda works at the therapy place in town and managed to get us to the top of a 4 page waiting list and placed Landry with Sheila who she said is great with babies. She was right, Sheila is wonderful with Landry and has been such a huge blessing!!! Sheila determined that Landry's speech issues were due in part to a super tight tongue and oral-motor muscle issues. She spoke with Landry's pediatrician about some of the issues she was seeing and we ultimately had her tongue clipped, a Physical Therapy Eval done and a video swallow study done. The PT eval show low muscle tone. I was a wee bit worried. The swallow study gave us answers about her daily choking habit - the girl seriously chokes so often that she is now patting herself on the back when she chokes. She was diagnosed with moderate Dyphagia and I was told that it is a muscle issue. Sheila came with Landry & I to the swallow study and explained everything that was going on - delayed swallowing, pooling, penetration of liquids into her airway without a hint of choking sounds. Afterwards she told me that they see Dysphagia a lot in kids with low tone and that it could contribute to asthma. Landry is now labeled as being at "high-risk" for choking and has to drink thickened liquids which is really nasty. She starts a 15 session therapy called Vital Stim this week. I was relieved because we had an answer and a plan and I love having a plan!

Landry had her 15 month check up today and I was looking forward to talking to Dr. B., our pediatrician, about the Vital Stim therapy and asking for his blessing to not thicken her liquids (she hates thickened water, who wouldn't & refuses to drink it unless she is on the brink of dying of thirst!) I was not prepared to hear him say I was going to call you last week but since you were scheduled to come in today I decided this was a better conversation to have in person. I am a little slow at times and I was thinking why would he call to talk to us about Vital Stim and thickened liquids, what a great doctor. He is but that is not what he was going to call about. He said that all of these things that have presented themselves (other than the food allergies) are related and that Landry has Hypotonia and needs to see a Neurologist. I was shocked. I almost dropped Landry but instead I managed to scrape her naked side with my wedding ring and she started screaming. Nice. Now I was trying to calm a baby and think of something intelligible to say.

Dr. B. does not necessarily think that in Landry's case it is caused by a metabolic condition but said the neurologist may decide to do some testing to determine the cause. So, I thought we had everything figured out but not so much. I know I am all over the place but for some reason that I can't explain I was somewhat ok saying that she had low tone but the term Hypotonia has me a little freaked out. I wasn't happy with it when I heard it, but when I googled it I really wasn't happy. Much of what I read rang true - GERD, breast feeding issues, Dysphagia, eye-muscle issues, a baby who observes other kids playing but is slow to try, sensory issues, little babies who hate tummy time and the list could go on. I think Landry falls on the milder side of the spectrum but since my medical degree is from watching episodes of ER and Grey's I should probably wait and see what the dr. says. Although I am a bit overwhelmed right now, I know that these are issues we can work through.

I am so thankful for all of the ways God has had his hand in this situation - my new job with great flexibility & health insurance, wonderful therapists & doctors, an ECI Speech Therapist who couldn't seem to get to us which led us to Sheila, answers even if they led to more questions and most of all peace.

“Peace I leave with you; My peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled, and do not be afraid.” John 14:27

Hello!

Hello…..

I have been away for a while. Life has been busy. I’ve had much to share but little time to do it in and other things to share that I have not quite been able to put into words.

I think I will give a little run down of what has been going on with everyone.

Pat-
Pat spent about every single weekend from the end of May - July 4th with Nicole at softball tournaments. They have been off for the past few weekends and it has been nice seeing him again. He is headed to Michigan at the end of August for a much anticipated and deserved golf trip with his brother and 2 good friends. While I was pregnant with Landry, Pat kept on saying that he would need a vacation once she was born and he is finally collecting. For some reason his weekend in Shreveport with his Fantasy Football league last August did not count. They are planning to play something like 90 holes of Golf in 4 days - I think he will need a vacation from his vacation!

Me-

I started a new job in May....don’t be jealous; I get to work from home! Although my job is very demanding and I have been working a lot of crazy hours to meet deadlines, I thank God for this job, the health benefits that came with it and the flexibility working from home has given me.

Nicole –
We surprised Nicole with a car for her 16th birthday back in June. We spent many nights and weekends shopping for the car and have a few crazy stories to share about that experience but I could not blog about it because Nicole reads my blog and then the surprise would have been ruined! Anyway, we found a “previously loved” Santa Fe and Nicole loves it. She was so surprised and we enjoyed exceeding her dreams!

Nicole’s 16th birthday celebration consisted of a surprise family birthday party at Babe's famous and old Chicken House, a birthday party with her friends at our house, a fabulous trip to New York City with her Aunt Linda and a weekend of shopping and fun with Aunt Amy and Uncle Ted. I will try to get her to do a “guest” post about her trip to New York so for now I will just say; they had an amazing time and were completely worn out when they got home.

Other than the never-ending birthday extravaganza, Nicole has had a ton of softball tournaments, a busy social life, a job babysitting her sister and spending time with boyfriend. Yes, a boyfriend. He is a very nice and they were good friends for nearly 2 years before they began dating.

Matthew-
Matthew enjoyed helping us shop for Nicole’s car. In fact it was Matthew, Landry and I who bought the car while Pat was with Nicole at a softball tournament. He was a fantastic help and was in charge of finding out what did and did not work and was an authority on what his sister would and would not like. We have all decided that Matthew is the best secret keeper in the world!!!

At the end of June, Matthew, Landry and I made a quick weekend trip to Tulsa to celebrate all of the summer birthdays. We had a great weekend and Matthew stayed in Oklahoma for the week with his cousin Megan. He has had a pretty low-key summer so far and he is looking forward to turning 13 this week, going to football camp in 2 weeks and church camp in 3 weeks. Now that he is officially a 7th grader he gets to start going to youth group at church with Nicole.


Landry –
Our sweet little girl took her first steps the day she was 14 months old and now she is nearly walking like a pro! Her hair has grown like crazy and has the cutest little curls in the back. She has transformed from a baby into a toddler and it happened literally overnight. She loves to go outside, play with balls and get into the Tupperware cabinet.

Landry was tongue tied and had her tongue clipped in June. She had to be put under and got four stitches to correct what her Speech Pathologist called the tightest tongue she had ever seen. She was all smiles before surgery and on the way home she fought to keep her eyes open. Once home she slept for 2 hours then cried for 7 hours. The next day it was all good. On the way out, the nurse gave her a little stuffed dog - a consolation prize of sorts - you came in here happy and feeling good and now you feel yucky, so here's a stuffed dog. Anyway, the dog has become a favorite and sleeps with her. After 3 weeks of speech and at home oral-motor exercises Landry finally stuck her tongue out. It's the cutest thing ever but I have not been able to capture it on film! More importantly, she is making sounds that she was previously physically incapable of making.

It's late so I will have to share the rest of what is going on with Landry in a separate post.

Sweet Sixteen

My first baby is turning 16 today. I can't believe it. Where has the time gone? I remember her birth so clearly, like it was just yesterday. The overwhelming love I had for her on her "birth" day has grown even stronger during our 16 years together.

I want to honor's Nicole's special day by sharing 16 things I love about her.

1. I love her for herself.
2. I love Nicole's heart for God.
3. I love her love for her sister and brother. I know at times she get annoyed with each of them but she really does love them with her whole heart.
4. I love Nicole's smile - it brightens a room and my heart!
5. I love her sense of humor - she is so stinkin' funny!
6. I love that even when things are not happy in her world, like when she was target practice for a wayward scorpion, she still cracks jokes.
7. I love her height and that she shares it with me! She will reach things from the top shelf for me.
8. I love her competitive spirit.
9. I love her eyes - they are so beautiful and share so much.
10. I love Nicole's heart for others - she is so caring and compassionate.
11. I love her natural born leadership abilities.
12. I love her honesty and sense of right and wrong.
13. I love talking to her.
14. I love Nicole's sensitivity.
15. I love her personal safety concerns.
16. I love her hair - the girl has some beautiful super thick, shinny hair!

I would say that I love her texting ability but, I think I am more impressed by her skill and speed than actually loving it.

To my sweet sixteen year old daughter,

Dad and I love you so very much! We are so proud of the young woman you have grown up to be. Although we would like to keep you little forever, we also look forward to seeing what God has in store for your future. Remember to always keep your eyes and heart focused on the Lord.

The Lord will guide you continually, and satisfy your needs... Isaiah 58:1

I am so grateful that God chose me to be your mom.

There are screams and then there is this scream

Never in my life have I heard such a scream as I did in the wee hours of last Friday morning. I don't think I will ever forget it. It was the kind of scream that grabs your attention and demands action before you can even crack an eye to peer at the clock. Just thinking about the scream and describing it is making my heart beat a little harder.

Pat and I could not get our bedroom door open fast enough. I did not even have time to think about what or who we would find on the other side. It didn't matter. Pat was sure that we would find some crazed man with a chain saw chopping up our children. I do remember Pat saying, "Hurry - Go" as he pushed himself out of our room in front of me. And some say chivalry is dead. Not in my house, thank you very much!

We found Nicole sitting on the kitchen island. Screaming and inconsolable. Her limbs were all still attached and there was no man with a chain saw. No pools of blood. Thank you Jesus.

Just as I was wondering if all the screaming was due to her witnessing her brother's murder, Matthew showed up. Thank you Jesus.

The first discernible word we heard was "scorpion". WHAT??? She finally managed to get out that it was in her bed and had stung her, multiple times

Not being a native Texan, I do not know the proper first aid for scorpion stings but that did not stop me from coming up with a course of treatment. I decided that she should rinse her legs in cold water. Not sure where that idea came from but, we decided to go with it. Pat got ice. I guess our not so thought out middle of the night logic was to freeze the pain away.

Pat went to investigate her bed for the alleged offender because that is definitely a mans job, while I tried to convince Nicole that cutting off her toe would not solve her pain problem. Pat found the offending scorpion killed it then flushed it down the toilet for good measure.

One time on an episode of Texas Walker Ranger some bad guys tried to kill a man with scorpions, so I was somewhat concerned that my oldest child would expire on the kitchen counter with her legs in the sink. I googled scorpion sting first aid while Pat tried to console a still screaming and shaking Nicole. I was thrilled to find out that we were on the right track with ice and water. My medical degree from watching Greys Anatomy, ER & other medical shows sure does come in handy at times! In case you are wondering or ever in this predicament, you should also wash the affected area with soap, elevate any affected limbs and apply ice with pressure.

We called the "Ask a Nurse" number that our insurance company provides and she told us to take Nicole to the ER. I really think that is their answer to everything. Nonetheless, we decided to err on the side of caution and took her to our favorite ER. It had been a while since Nicole had made a trip to the ER and it really seemed like a good way to kick off summer break. Good news, she lived and did not get a shot but the bad news is that she is terrified to sleep in her room.

This evening a local pest control company spent 2 hours treating our house and yard for every type of creepy crawly critter. We are praying that it will help all of us sleep better tonight.

Rainy Day Blues

Saturday was one of those dreary all day rain events and by 1PM I think the entire family was suffering from the rainy day blues. The house had been cleaned and a few little odd jobs that needed to be done had been marked off of the list. Summer softball tournaments are about to begin and this was our last weekend with out a tournament for about the next 6-8 weeks so we hated to sit around and do nothing at all.

On Friday, before I knew it was going to rain, I thought we'd take the kids to the zoo. Matthew had designs on going to a Ranger game. Unfortunately neither one was appropriate for a day with near constant rain.

By 1 o'clock on Saturday we were all like.....ok, what are we goign to do today. Pat suggested any one of several museums in the area to which Nicole declared, "We are not museum people!" What!!!!! Does she not remember us taking her to numerous museums over the course of her life. Heck, we just went to the LBJ library in march. I think that counts as a museum.

I threw out the idea of doing a craft project and was surprised when Nicole & Matthew both said that it sounded fun. Off to Michael's we went in search for stuff to make. Nicole and I decided to make a bow holder for Landry's growing hair bow collection. We also found a cute wood frame for her to paint. Matthew picked a wooden tank that he could build and paint. He decided that Pat would like to build and paint a wooden fighter jet.

We had a great time sitting around the table building and painting together. We might not be the most artsy people but we had fun.

Here is a picture of the work in progress.....

The final products.....

In case you are wondering.....while we we all being creative, Landry sat in her highchair eating a snack and drinking 2 beverages. She likes to be well hydrated just like her big sister! After her snack she crawled & cruised around the table checking on our progress.