St Jude Marathon

My cousin, brothers, and I started running the St Jude Half marathon/ marathon in 2005. We have tried to run every year since (except when I was pregnant or just had baby). We do the half marathon every year, except in 2010 my cousin and brother ran the full, and love it. It's for a great cause and I love having this memory with my brothers. Saturday was the annual marathon and this year running had a different effect on me than years before. We run beside LeBonheur Children's Hospital, which is where Ansley and us spent most of July!! It tugged at my heart a little running by but it made me push harder. I missed seeing my parents standing at mile 6 where they stand each year (dad always drove the back roads to park on the road and mom didn't want to try it- she would have gotten lost) and that too was hard! I hit a wall at mile 8 but around mile 11 or 12 I saw a sign from a spectator that said "This is nothing, you have been through harder"!! Ummmm hello...was that sign for me??? It gave me the push I needed!! I ran one of the worst times, if not the worst time, I have ever ran but it was fine with me because I did finished.  It was completely worth the cause:

The St Jude Heroes raised 5.7 million dollars for St Jude!!!! 

 About to run by Le Bonheur

 Cousin, me, and the brothers

 Their thoughts on this race

The thousands of people waiting to run

 Running

One of  the spectators :) 

Holidays

Sorry the pics are not in order!! 

Aiden and I making a Christmas craft

In their Christmas pjs

The 3 babies at Thanksgiving (all 1 month apart) 

Thanksgiving came and passed quickly but it was an extremely hard day! I woke Thanksgiving morning and knew it was not going to be easy! I had many crying spells while cooking that morning and watching the parade but while getting ready I lost it! I just knew it wasn't going to be the same and honestly I wanted to go back to bed and let the day pass. But if my mom could do it, so could I, and we all did. We made it through the first holiday without my dad! The day before thanksgiving was my parents 35th anniversary! My brothers and I spent the entire day and night with my mom and it was so fun just hanging out! This time of the year was my dads favorite, he loved Thanksgiving and being with family and enjoying whatever we wanted to eat.  Last year my dad was doing well watching is eating and he told us before Thanksgiving Day he was going to enjoy it and eater what he wanted! I'm so thankful he did!!! Dad loved Christmas the most. There wasn't anything he didn't enjoy, he even Black Friday shopped with me (at Lowes or Home Depot) if I asked him to! My dad was known for making Peanut Butter Balls this time of the year, and he would take weeks making them for everyone!! He and my mom always did some major decorating. Dad would spend the entire day after Thanksgiving decorating the outside of the house (not like Griswold style). So we know the weeks will only get tougher but we know dad would want us to enjoy this time together. Please remember us the next few weeks!

ONE YEAR OLD

My beautiful baby girl is ONE!!! We had a wonderful party and I will post many pictures soon!! Ansley went to the doctor Monday and weighed in at a huge 18lbs, putting her in the 10th percentile for weight! She's TINY but I would be too if I never ate! Her doc wasn't too concerned about it but does want us to force the cup more so we have been trying!! She had a great visit at the neurologist last week and he is pleased with her development in 3 months!!

2 short weeks

In 2 short weeks this sweet girl will be ONE!! I can not believe how fast this year has gone.  I have been busy planning her party, although she will never remember it I still feel like it should be a big celebration of all she has overcome this year!! 

God has big plans in store for this sweet girl! 

My babies sleeping together

Already wrestling!! 

On the up and up....

I am feeling much better this weekend, almost back to my normal self!
I also have some wonderful news- my baby girl is 3 months seizure free as of yesterday! I had my monthly meeting with her therapist today and we both feel there is no pressing issues we are concerned with for her developmentally. She is doing great!! She is a completely different child since starting day care and therapy.  She has developed such a personality and independence! She has just recently decided she wants to eat table food and loves it!! She is the sweetest thing. I do hear more and more often that she looks just like my dad and lately I see it so much more. Her actions are even very similar to him.  My mom and I were discussing last night how much Ansley loves men.  She wants Brandon, my father in law, or brothers to hold her anytime she is around them.  When she was a baby dad would hold her in his chair, on his tummy while Ansley slept (he did me, my brothers, and grandkids this way), oh how I miss seeing that!!
This weekend we had a memorial service for my dad at the hospital where is was employees for 30 years.  I've mentioned this before but the week after dad passed away the dialysis department at the hospital did a memorial in honor of dad that was placed on the hospital wall of the department.  The service Sunday was for all the hospital employees that passed away this year.  It was a very nice ceremony yet very hard.  On the back of the program these words where written:
And if I go while you're still here...
Know that I live on,
Vibrating to a different measure
-behind a thin veil you can not see through.
You will not see me, so you must have faith.
I wait for the time when we will soar together again,
-both Aware of each other.
Until then, live your life to the fullest.
And when you need me,
Just whisper my name in your heart
...I will be there!!

I bolded the line "until then live your life to the fullest" because my dad would say that exact thing!! Are you living your live to the fullest??

Beach

We had a blast at the beach.  My mother, mother in law, and sis in law went with us.  Ansley enjoyed the water and sand.  She did not like being confined to the baby pool on the beach.  She however loved the big pool.  Aiden LOVED the beach and pool.  He loved everything about FL and I know he would stay for weeks if he could.  We had perfect weather and it was the absolute best trip.

 

Aiden loved playing on his buggy board.

Ansley cried anytime I wasn't holding her.

Aiden did a lot of go kart riding!

 

Where have we been??

So where have we been?

 The Beach (a whole post will come for that)

 

Doing a lot of this- swimming 

(well that was until it got cold this week)

 

I have been training for this!

 

 AND...

WATCHING THESE TEAMS PLAY FOOTBALL!

I must admit though football is just not the same without my daddy to watch it with.

 

 

WHERE HAVE WE NOT BEEN?????

We have not been in the hospital with Ansley!! 

But unfortunately we have been in the hospital.

 

I have been meaning to update for awhile now but really have not sat down to take time and post.  We had a GREAT time in FL. But you can hear more about that here. 

Ansley started going to day care 2 days a week.  She goes to therapy for an hour one of those days.  She is doing really well.  She loves school and enjoys playing with friends her age.  I especially love my days of getting caught up around the house, exercising, grocery shopping, and most importantly spending time with Big Brother.  Ansley is almost 11 months old now.  We are about 3 months seizure free, yes that is correct- no seizures since leaving LeBonheur.  She is pulling up and trying to cruise around.  She loves crawling (it's more of an army crawl).  She still has NO desire to eat anything other than her bottle.  This to me is a pressing problem and I really want ALOT more therapy focus on it so hopefully we will see improvement soon.

Aiden is still staying at home with me all 5 days! Sometimes it can be a little overbearing but I know next year, when he starts Kindergarten, I will not get to keep him home with me when I want.  He seems to be adjusting well to the changes of everything that has happened to us this year.  He acts a bit still but he is 4.  He is the smartest child I know (I'm biased) and loves to learn.  He is working soo hard on his handwritting, which I have mentioned is bad, real bad.  But now its getting A LOT better. 

The hubs is still doing what he does best and working hard to provide for our family!  When he is not working we have LOVED our days as a family doing anything or nothing. 

ME- I am doing what I always do- being a house keeper, maid, cook, and MOMMY to these sweet babies!  I have enjoyed the past weeks of hanging with my babies without a schedule or anything planned.  But I know that will end sometime and I need to go back to work, I'm pretty confident I will try to go back to working in Jan.  Until last week I was working hard at my training for the St Jude half marathon and getting my prebaby body back. However last weekend I had a severe pain in my stomach and side.  After a little conviencing from Brandon I decided I needed to head to the ER (we hadn't been the hospital all month so why not? ha).  After seeing the doc and having a ct scan, I was being put to sleep and undergoing surgery to remove my Appendix.  YUCK!  I have recovered well and feeling ALOT better now however I can not lift anything over 10 lbs for 6 weeks.  Which means I can not pick up Ansley to feed her, change her, rock her, bathe her....  SO of course my mother and mother in law have stepped in again.  They are taking turns staying with me when Brandon is working.  My training has been placed on hold and hopefully soon I can get back to it. 

I again apologize for the 2 months of silence from the blog I will TRY better. 



I can see clearly

Ansley's eye appointment went well last week. We will check back at a year and half but the eye doctor thought her vision was fine for now!
Ansley is still seizure free and doing well. She is meeting with her therapist this Wed. I'm excited to see how it will go. She still has no desire to eat food.
On Friday we head out for Destin FL so we are keeping a close eye on Hurricane Isaac, are you as well?? Please be in prayer for all those around the area that will be affected by this storm.

9 months old and 4 weeks post surgery

Ansley is 9 months old now! Wow how fast that flew by!
Some info about Ansley now is:
17 lbs
27 1/4 inches
Size 2-3 diapers
6-9 month clothing or 9 month
Still not crawling Or pulling up
She has started eating a little more baby food but still avoids textured food.
Hopefully she will begin therapy in these areas through TEIS soon.
She had a great report from her cardiologist and neurologist.
Her pediatrician thinks she may have a cross eye so we have been referred to an eye doctor, whic we see next week.
Finally we are 4.5 weeks SEIZURE FREE!!!

2 weeks post surgery

It has been 2 weeks since Ansley had her pacemaker surgery and she is doing good.   She has just started rolling over and putting weight on her stomach but she will not use her arms to lift or stretch, in order to crawl.  She has started eating a little better than she was.  She now eats baby food at all 3 meals and will eat about half a jar each feeding.  She is showing a little more interest in grabbing her puffs or yogurt melts and trying those.  My hope is in the next month she will slack off on so many bottles and start eating more foods.
 On Friday TEIS (Tenn Early intervention services) came to talk to us and get the paper work started in case Ansley does need early intervention.  Because she is special needs she definitely qualifies for TEIS but we are not sure if she will meet the requirements to get services. We are mainly concerned with her gross motor skills but they will come next week to evaluate her in occupational, physical, and speech therapy.
Most everyone reading this knows I had to back out of my job offer with a local school system to stay at home with Ansley. This decision surprisingly was VERY hard for me and very emotional.  I know without a doubt I'm needed most at home with her but staying at home long term is not something I want to do, especially with Aiden at home too.  We made the decision to keep Aiden at home too instead of paying for him to go to daycare when I have no income.  Our goal is to get these seizures under control and get them both back in day care so I can find a job and get started using my new degree that I just spent 2 years getting.  Having this job was one very huge weight off my back so now I've added that weight back on top of the other.
Speaking of getting Ansley seizure free...she hasn't had a seizure in 2 weeks and 3 days!! This is the longest she has ever gone without having a seizure since her diagnosis 3 months ago. We are hopeful and praying this change in med is the answer!  Since she hasn't seized we have not seen how the pacemaker will change her seizures, if it does change them. We are fine with not knowing and will be pleased if her heart never needs that help pacing!
Thank you for checking on us, asking about us, bringing us dinner, sitting with us, and most importantly praying for us!

2weeks

Its been 2 weeks since Ansley had a seizure!!!! Can I get a whoop whoop??? :)

Life at home

First I would like to let you know wew are 1 week and 1 day seizure free. This is not abnormal so I can't get too excited. She will usually go a week without having one but I am praying the increase in frequency and amount on her meds is really helping. Being at home has been a little different. Ansley now sleeps with a pulse ox and an apnea monitor. Plus we take an oxygen tank with us whereever we go. Yea I looked silly going for a walk this morning pushing a stroller and oxygen tank. But you do what you gotta do. Ansley loved seeing Aiden when we got home and of course we did as well. I know it's nothing but babble but Ansley makes the best "a de" sound ever, which just lights up Aidens world. We were a little nervous of how Aiden would be around her since he is usually unintentionally rough, but he has done well. It breaks his heart to see her uncomfortable. She hasn't seem to hurt too much since being home, just uncomfortable. She has tried to roll over which she let us know did not feel good. She likes to sleep on her side or lay on my shoulder to sleep and she can't do that just yet, so getting to sleep is a task. Understandably she just wants to be held and cuddled (gently), which we have no problem doing. Overall Ansley is doing great!!! One thing I have been meaning to do is let you know just how blessed and thankful we are to have wonderful families. Brandon has 2 sisters and I have 2 brothers, as well as our parents. Since the very first day Ansley went into the hospital they, along with my sister and brother in laws, have been there with us non stop. They have packed our bags at the last minute, washed our clothes, brought us food and snacks, taken care of Aiden, and driven miles and miles to be with us. We already know they are the best family but I have failed to tell them that enough! Thank you all so much!!

Home sweet home

We are home!! I have a post in mind I would like to do but for now I'm gonna love on my little guy!

Rough days

We had a rough day yesterday. After my post Ansley just could not get comfortable she was very inconsolable. She would fall asleep for a minute and then scream out. Her heart rate was high and around 7 her fever spiked up. All I can think about is infection. They started her back on fluid IV last night and her heart rate came down and fever is 100 now. She is not quite as cranky today. They have stopped her fluids so she will want to eat more and rely on her formula more than the IV fluids. The doctor started another antibiotic just in case she does have an infection. Because she is showing on us signs of pain they are still giving her pain meds, just Tylenol with codeine.we appreciate the prayers and are praying for a good few days so we can go home and see our sweet boy that we miss so much.

Update

Ansley is doing well. She was just moved out of ICU into a regular room. I got to hold her for a little while which was wonderful. She is taking a bottle again. It's small amounts but every little but helps. She had a good night and as doped up on morphine. Her heart rate kept going up, probably because she was in pain and a little "dry". When her heart rate went up her pacemaker was "confused" and tried to step in and pace. They have fine tuned it and hopefully that will help. We have a ways to go recovery wise and a long ways to go with Neurology and her seizures. We appreciate the continued prayers.

Complete

Ansley is out of surgery it went well.

Surgery

Ansley is currently in surgery.

Surgery

So it was everyone's thoughts that a pacemaker is the best option for Ansley. Her surgery is at 10am and her surgeon is Dr. Goldberg! Thank you for the prayers I'm sorry so short it's been a rough day and night! On top of the news today I really really am missing my dads helpfulness and love in these situations!

Nice day

No seizures to report today!! Ansley is wire free on her head!!! We are all so excited that she is free from those heavy cords. Everything the neurologist needed to see he was able to see over the last few days so it was no longer needed. We moved to the cardio floor after lunch and have settled in here. Dr. F came in early and talked to us. He just wanted to make sure we are prepared for tomorrow and getting a game plan for going forward whatever it may be. He did explain a little more what the cardiologist will be looking for tomorrow. The cardiologist will review the readings from the holter monitor (monitors the electrical activity of the heart) that she was wearing during the seizures. If during the seizure her hearts electrical system was affected we will most likely be looking at a pacemaker. However if the heart is having prolonged beats or skipping beats we might can treat other ways. I will update on Facebook or here tomorrow if I have time to let you know how exactly to pray for Ansley. On a positive note we did have lots of visitors today, which was great for Brandon and I. This morning we spent time with my mom and Aiden. I miss that wild boy so much and so does his sister!! At lunch, my moms cousin and his wife visited and brought us lunch, which was soo incredibly kind. Late afternoon and tonight we visited with my best friends and their hubbies. It was soo great to have fun laughing and hanging out. Most everyone knows my best friend Beth's sweet girl had 2 open heart surgeries at 6 months. She and her husband gave us some words of encouragement today so I'm so thankful they came to see us today. I also received word today that our wonderful pastor requested prayers for us from our church family. We feel them and appreciate all of them. Thank you.

From head to heart

This post will piggy back off yesterday's. I'm not sure how we came to this hospital as a neurology (head) patient and possibly leaving as a cardiology (heart) patient. Today Ansley had 3 more seizures, 1 that was worse that yesterday's and 2 milder ones. The milder seizures are not as concerning as the harsher ones of course. What happens during her seizures is Ansley's BRAIN stops, completely flat lines. When the brain stops the vagus nerve, nerve running from brain to heart, stops as well. When the brain is not telling the heart to pump it stops. Ansley's heart is stopping causing her to turn blue but within a few seconds it goes back to normal rhythm. I must note real quick Ansleys heart is very healthy when not seizing. Her heart is just the innocent bystander to a horrible wreck in her brain. Her brain is affecting her heart. Ok back on track- Right now her seizures are lasting 1 minute give or take some. However if she has a prolonged seizure and her heart is not pumping and giving blood back to the brain it could damage other organs or her heart might not start back and she will not live. Her neurologist has seen it happen and luckily the child was at the hospital and was able to be revived. Well we can't live at a hospital we have to go home and back to life so we have to find a solution until her seizures are under control. The solution is a pacemaker. It's an on demand pacemaker that will only kick in when she seizes. But because Ansley is so small the pacemaker procedure will be a huge procedure consisting of cutting open her chest and sewing the pacemaker into both chambers of her heart. The pacemaker will keep her heart rate from not dropping into the 10s and 20s when seizing. But the problem is now do you want to open up the chest and operate on a healthy heart of an 8 month old??? We will have the cardiologist look at all of her heart monitorings since being here and and he will determine that answer. Once we can get the seizures under control or at least milder this will not be as big an issue. But right now on average she is seizing multiple times weekly. Do we chance that they will remain short and not prolong?? Do the risk of pacemaker outweigh the benefits?? All these questions and many more run through our minds this weekend. We pray Monday the cardiologist will give us definite answers. As for now we will move from the Neuro floor to the cardio floor so she can be monitored closer for her heart issue. Our neurologist, who have I mentioned I LOVE, will follow along with us and Monday we should have a game plan going forward with or without a pacemaker. Thank you again for your prayers and tonight I can not down play the thankfulness I have that God has kept Ansley wrapped in his arms the past few months. after seeing first hand on the EEG how her brain and heart change during these I see how lucky we are the seizures have never lasted longer. Prayer Request: - Neuro and cardio get a clear game plan on what's next. - If the decision is surgery of course we need major prayers for safety during and after. - We can find a med to stop these all together. - They never get longer in duration. - I can work out the best care for Ansley and my work situation. - Aiden understands we have to be here now it's the best place to be. - Most importantly that Ansley NEVER is in pain.