Kindergarten!

Tuesday was Prestons first day of kindergarten! He was a little nervous at first but by the time I picked him up he was smiling ear to ear and talking non stop about how great his day was! He said he likes his teacher and he made new friends. He told me all about his classroom and his little cubby where he keeps his things. He thought that was really neat. He also told me about 50 times that there is something on the playground that he can't play on until next year because he could fall off and get hurt. Preston shared with me how he got to pick his food at the cafeteria and what he ate. Surprisingly he made healthy choices! Needless to say I am one proud mama! He did great and I am so excited to watch him grow and learn this year. He has a great teacher who loves her job and all her kids. I think this is going to be a great year for him!!!

Preston also is playing T-ball. As far as I can tell (this coming from someone who knows nothing about the sport) he is pretty good. So far he has been hit 2 times with the ball and shook it off both times. He is really learning how to catch now and is hitting like a pro. Throwing is something he has always been good at, comes natural to him. Games start soon and although it is a wicked schedule (all weekday games!) I think he is really going to enjoy it. I am very excited to see how he does!! he really seems to love the game.

As for the other two...I met with the genetics team last week. First time we have met since Phillip was first diagnosed. Although there isn't a lot known about this condition they are learning new things little by little. We did find  that kids with this condition seem to all have a history of seizure. There isn't any solid proof yet that this is linked for sure but some really strong evidence this could be the cause of seizures in the boys. They are still working on researching this deletion. His doctor gave me a couple of websites of support groups and told me the best way to learn about this condition is talk to other parents going through the same thing. I couldn't agree more. He also said he believes the boys have some kind of autoimmune disease that we haven't found yet, may never find because technology just isn't there yet. Not that knowing would change anything. He did suggest we get another cystic fibrosis test, but we have done 2 of them, maybe 3? I think he just never could sweat enough for them. But I think they looked for genetic markers for that and didn't find any. So although they couldn't tell me a ton more than we already know I felt good about the meeting. I got some good information and some stories from other parents to read over. All in all it was a good meeting. Phillip is doing well. Upped his feeds again now he is back to the weight he started at again. Payton is doing great. He is loving preschool. Tells me he is so excited to go! I love it. He is really settling into his own.

So thats it for us. I hope everyone is doing well and thanks for stopping by!!! Please remember to keep my friend Kelli in your prayers (mylifegodswill.blogspot.com)!

Have a good one!

Good news...and then some

Prestons MRI came back same as last time. He still has the lesion on his brain that is unexplained. They said it could have happened in utero. The good thing is it isn't growing. So as far as his seizures are concerned we just see if it happens again and if he gets a high fever we may put him on preventative medication. Also Prestons urine has returned to almost normal. We went yesterday and there is still a trace amount of blood in it but it is still in the acceptable range. It is almost completely gone! Praise God! Another positive for Preston is his hand is finally almost completely healed from his cut. Took a long time and a lot of boring days spent in the house not able to use his hand but now he is back to normal! In fact T-ball starts soon and he was out practicing with James this weekend. Preston is back to his normal self again!

 Phillip decided to scare the life out of us by having a seizure a couple weeks ago. Luckily we were at James' parents house when it happened so they were able to keep the boys while we rushed Phillip to the hospital. It was a pretty bad seizure and he completely stopped breathing. If it hadn't been for him not breathing I would not have called an ambulance. By the time we got him to the ER he was almost back to normal. They think he had a febrile seizure but we are not sure. I took him to the doctor the next day and he did have strep throat so it is possible that he had a fever spike. We are also working on getting Phillip less dependent on his feeding tube. So far there has been a little improvement in his eating by mouth but in turn he lost 3 pounds. That loss dropped him from the 37th percentile in weight to the 9th percentile. He can't afford to lose any more weight but I don't want to lose any ground on his mouth eating. I decided to give it another month and monitor his weight closely and if he drops more within the month we will increase his tube feeds. We are shoving higher calories in him and that causes him to have diarrhea so that isn't helping! It is such a battle with him on the food front. A huge balancing act. I have to journal every thing he eats and how many calories it is. That way we know about how many calories he takes a day so we can figure out how much he needs via tube. It is a lot of work but i know in the end it will all work out! He is still going to his special school and loving it. Still doing his 3 therapies a week. He sometimes struggles with them but for the most part he is doing well. Phillip is a champ during his infusions! Last week i put him in his high chair got him all hooked up and walked back into the room and he was asleep. Best thing he could do is sleep through it and I think he finally figured that out!

Payton is doing great. A little onry but doing well. His weight is pretty good and so far he hasn't picked up strep from the other two. He is looking forward to starting school in a couple weeks too. He is hoping his friend Ella is in his class again. Payton fortunately his doing amazingly well. He may be a little tiny but he has a HUGE personality!

So that is about all that is going on with us! I have mentioned my friend Kelli (mylifegodswill.blogspot.com) before in other posts and I ask that you continue to pray for her and her family as she continues chemo treatments. Kelli is improving and through her God is showing us that miracles happen. She undergoes her next round of chemo Thursday and I ask you all take time to pray for her on Thursday, that the chemo continues to work and that her body heals. Thanks again everyone one!

Much love!

Summertime blues

Here we are at the beginning of summer and somehow we have landed 2 sick kids. Aren't they supposed to be sick in the winter and well in the summer??? Phillip and Preston came down with a cold a couple weeks ago. Of course Phillip has decided to hang on to it for a while. After almost 2 weeks of coughing and runny nose he seems to be improving. Thank goodness. I don't do snot well haha!
Preston is a different story. He ran a high fever and Sunday morning he seemed to have had a seizure. We took him to the doctor and she said he looked ok. Just a cold and to contact his neurologist. His neuro decided it was best to go ahead and get another MRI to make sure the spot they saw on the MRI he had last year hasn't changed. In the meantime Preston started peeing blood. I have to say it is a little shocking to see your child urinating something that looks like tea! Back to the doctor we went. After lots of tests and his pediatrician consulting with the nephrologists (kidney specialist) they believe Preston has some thing called IgA nephropathy. IgA nephropathy is a kidney disorder that occurs when IgA-a protein that helps the body fight infections-settles in the kidneys. After many years, the IgA deposits may cause the kidneys to leak blood and sometimes protein in the urine.  We cannot be sure this is the right diagnoses unless we have a kidney biopsy. At this time I don't think that is necessary and neither do the doctors. We have to monitor him closely, watch his blood pressure and make sure his urine is returning to normal. If he has another episode of large blood in the urine then we will revisit the idea of the biopsy. In the middle of all this we found preston had strep throat starting so luckily they were able to put him on antibiotics before it got bad. Wednesday Preston had his MRI and that went well. They had to put him under to do it so he was a little goofy and off balance but he seemed back to normal by wednesday evening. I am hoping they call with those results sometime today. Through all this they have been pretty good. Preston hates needles but was a trooper with all the testing. Sooooo thats what we have been up to! Not much right. hahahah! Time to run! I hope everyone is well!!!!!

Searching....

Tonight i find myself at the computer once again trying to find some answers to the puzzle i like to call, Phillip. I have been searching and digging for almost 2 years now and only only find myself with more questions. As the kids grow and change we find more and more challenges they have to face. As their mom i desperately want to find the magic answer. the 'fix' for all this. but there isn't one. its just more questions, more confusion. It can be so frustrating sometimes. someone told me once that had i found this out when preston was born i wouldn't have had more kids. HA! yea right! i would never change having my kids! i would just have had a heads up. the other day while in the shower (i do my best thinking in the bathroom haha) i realized that had Phillip not been born and had all these issues we never would have figured out the other two! Phillip was our little key to unlock the door to understanding. Sure now I have more questions than ever but that realization gave me the faith to press on. To just keep digging. We are meeting with his geneticist soon and I decided to email him to really press for more detailed DNA testing if possible. I really want to dig deep and make sure we haven't missed something. If I don't get anywhere with him then I am going to start contacting the authors of all the articles i have read on this condition. I don't care how long it takes me I am going to get some answers, somehow! I have been so consumed with just getting through the day that i have stopped looking for answers. Our schedule is getting better. We have been able to adjust Phillips therapies and make it a little easier for our schedule so its time to get back to researching. I guess I kinda just lost hope after all the research and not finding anything. I got frustrated and decided to just let go.
My friend Kelli is undergoing treatment for triple negative breast cancer and her attitude is amazing. she keeps a positive attitude and her sights are always set towards the heavens. Her unshakable faith is something admire. She has been an inspiration to me. So I am back on my high horse trying to find some answers hahah! Being a mom and walking this journey with my kids has been the biggest blessing of my life, but also the most heartbreaking. But I know this is all part of Gods perfect plan and everything will fall into place. So tonight as my tired eyes google over and over again I do it with renewed strength and determination. I am so thankful for those 3 incredibly beautiful children and pray that with every day i become a better parent, and every day i become one step closer to unlocking the door to all our answers.

P.S. To read more about my friend Kelli please go to her blog: http://mylifegodswill.blogspot.com   Her treatment is extremely expensive so if you are able please donate to one of her fundraisers or directly to her. You will be greatly blessed!!! Love you kelli, keep singing!

Blessings!!!

Crossing the stage!

Tonight my oldest will make that short journey across the stage for the first time. Preston is graduating preschool and moving on to "big school" as he calls it. This day came all too soon for me! We are so proud of our little man! It seems like yesterday he was just learning how to walk and tonight he will be walking across stage to get his first diploma! Where does time go?? He has worked so very hard to overcome obstacles and learn how to manage his sensory disorder. He has been at this preschool for 2 years now and every single day for those 2 years he has come home with a smiley face on his paper. Meaning, for 2 years he has never had a bad report! He sure knows how to make a mom proud! I am sure tonight as he crosses the stage I will shed a few tears. Some of total and complete joy for his accomplishments and some because he is just growing up so fast. I look at Preston and am overwhelmed with joy. God has been so good to us. He gave us 3 of the most amazing kids and I feel amazingly blessed. I know in a short 13 years Preston will be making his journey across the stage again and once again I will shed a few tears, but I hope just for tonight the time will stand still and I can hold on to my five year old just a little while longer...

Doctors, lab techs, and therapists! Oh my!

Over the past couple weeks I haven noticed that Payton has been kind of lethargic and not eating well. There didn't appear to be any real onset to it and no other symptoms. I gave it some time and decided we better talk to the pediatrician. We went in today and told her what was going on and she decided to order a million tests. Payton sat like a big boy while they drew 9, yes 9, huge vials of blood. Although he did cry and ask to go home he didn't put up a fight. Just sat still. I was so proud of him! About 45 minutes after we left the office his doctor called and told me that Payton has mono. Something she wasn't real convinced it was at first given that he never had strep or even a sore throat! But mono it is! So he has to spend the next 6 weeks just chilling out. Isn't that perfect timing now that the sun is shining and its 80 degrees outside! Oh well, we will make the best of it! No wonder the kid has been to tired! Now it's just a waiting game to see if the other 2 catch it. Lets hope they don't!

Also today was Prestons first OT session. We went over his evaluation and his findings were that he has a 35% delay in grasping motor skills and 19% delay in visual motor skills. He also was found to have a significant sensory processing disorder and tested either definite difference or probable difference in all areas. He did not test typical in any area. So we have some serious work to do with him. I am thankful we have him started in OT now and I know with that and the work we will do here he will catch up in no time. As for sensory issues it will take some time but his body will learn to respond to stimuli better. It's amazing to talk to his therapist and FINALLY somewhat understand some of his behavior and responses to things. I feel like I have some level ground to stand on with him for the first time in a very long time. He isn't just a kid acting out. He is a kid that can't control it and needs a little help learning how to process everything. I feel like we are in a good place with him now. Although we are not sure at this point if he is on the autism spectrum. His therapist told me that it will take a couple months for her to be able to figure out if he is or not. Either way he is finally in a place where he can be helped and understood. and for that I am one thankful mama!

Introducing the "Dixie Chick"-ens!!!!!!!

Well spring is in the air and what better to do than get some baby chicks! This past weekend our family ventured out to Poultry Hollow Hatchery and got ourselves some baby hens. James and I think it is a great learning experience for the boys and will teach them some responsibility. Plus we will have eggs in a few months! James decided on the theme "Dixie Chicks" for them. We have named them: Faith, Dolly, Patsy, Reba, Trisha, Wynonna, Naomi, Loretta, Shania, Mandrell, Martina, and Sugarland a.k.a "Sugar". The kids are super excited to watch them grow. Right now they are in a large pen in the garage we built and in about 5 weeks they will be moving outside to the coop that James will be building! Here are some pics of the newest additions to our little zoo!!

Dinosaur braces and brave little faces...

Whew, what a week! We are all getting over being sick, boys thought it would be nice to share croup with us. Wasn't that just so kind of them!?? We also started laying wood flooring in the house this weekend. James and his dad worked ALL weekend to get the living room going. It looks really, really good! So much easier to clean up than carpet! I'm excited to see how it fairs in the rest of the house!



Phillip had his second visit with his occupational therapist this week and it went so much better than the first. We changed some things around and did his bye bye routine. He barely even cried for a minute! I was soooo happy! He actually had a great time and 'played' without missing me too much. He asked for me a couple times but didn't cry. I couldn't be happier about that! We were told to make him a crash pad. It is a designated area for him to go and slam himself down into that is safe and soft. So I am working on figuring out how to design that and keep the dogs out! We also signed the papers for Phillip to start at Project Help. It is a special preschool for children with delays and disabilities. There are some typical kids there too. Hopefully he will start monday. He will go twice a week for two and a half hours. I am really excited to see how well he does there!!!

Preston and Payton are doing well. They are loving school and being able to play outside in the warmer weather. It is so good to see the sun again! Well that's it for now! Hope everyone is having a good week!!

Oh, I almost forgot! These are Phillips new AFO braces he will have to wear. We are having trouble finding shoes right now but we will keep looking. We thought he would love the dinosaurs. He was excited to show Kim, his physical therapist. They are pretty cute!

Where it all began....

Hi and welcome to our blog. I decided to restart blogging because this is the most efficient way to keep everyone correctly informed on our daily life and to create a space for me to lay out my thoughts...

So first lets recap Phillips journey over the last couple years. At birth Phillip was happy and seemingly a healthy normal baby. At about 3 months old he was hospitalized for about a week and officially diagnosed with severe reflux. At 5 months old he was diagnosed failure to thrive, meaning he was not gaining weight properly. He was then hospitalized for about a month and had a NG tube (feeding tube via nose) put in. He kept the NG tube until September and then had a G-tube (feeding tube in the belly) surgically put in place. During his month stay at Vanderbilt they discovered that he had a rare genetic disease. His official diagnosis is a deletion of the X chromosome in the steroid sulfatase region at xp.22.3. This includes X-linked form of ichthyosis, a not so common skin issue causing the skin to be extremely dry and scaly. They concluded his FTT was due to his body working overtime to absorb enough nutrients to replace what he is losing through the skin. Basically he has to consume more calories than the average person his age. He was hospitalized many time for seemingly common illnesses that for him become serious. He has what they call Primary Immunodeficiency. This means that part of his immune system doesn't work properly. So he started what they call IVIG treatments at the hospital. IVIG is kinda like having an antibody infusion. We went in once a month to the hospital to the infusion floor and spent most of the day there getting his infusion. Very quickly his veins all gave out so we decided to switch to doing it at home weekly via sub-q. Sub-q means we use very tiny needles and that slowly release the medicine under the skin for his body to absorb over the next several hours. This method has worked wonderfully for Phillip. He has been far more healthy than he had ever been. Sure is isn't fun. It takes just over and hour to infuse and he is a little sore for the next day or so but it is what works for him. Phillip also has to have feeding therapy once a week. Since he has several GI issues he has difficulty wanting to eat. He often vomits for no apparent reason and usually has diarrhea. He also is delayed physically so he has physical therapy. He has to have braces on his legs because he toe walks and now his tendons have shortened. We recently learned that he is delayed with some motor skills and has a sensory processing disorder. He now undergoes occupational therapy once a week for those challenges. Sensory Processing Disorder means he cannot process things the way we do. Sounds, sights, smells all easily overwhelm him. He reacts in ways like head banging, hitting, throwing himself as hard as he can on the floor, spinning, ect. Here is a website to help explain SPD: http://www.sensory-processing-disorder.com/
We also know that Preston and Payton suffer from the same deletion as Phillip but have much less severe symptoms. We know that Preston has SPD and are working on getting him in to occupational therapy and are having Payton evaluated to see of he does too. So this is our journey. We have spent countless days at the hospital with them going through countless tests and procedures. We have consulted doctors at Cincinnati Childrens Hospital and our team of doctors have gone as far as Baylor to look for answers. The doctors tell us this disease is very rare and they cannot find studies anywhere on people who carry this. This means we have no idea what tomorrow may hold for them. So, we trudge along. Taking it one day at a time and when even that seems overwhelming we take it one hour at a time. The past few years have tested us beyond measure. There are some days when I feel like every time we turn around there is someone else telling us there is another thing wrong with our kids. But we fight a good fight. I talk to their therapists, question their doctors, talk to other moms who kids have these struggles, and I research almost non-stop. As their mom it is my duty to fight for them and be their voice. I love my kids beyond measure and would do anything to to provide them with a happy life.

I guess that about sums it up! Kind of a readers digest version of the last couple years!!! Hope this helps you get a better understanding of what our life is like! Please feel free to email or call us anytime you wanna talk or have questions!!!

Thanks for visiting!!!!!!!!!