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Preview: JONATHAN, our 25 week miracle

JONATHAN, our 25 week miracle





Updated: 2018-03-06T00:14:42.109-08:00

 



I called, He listened. I prayed, He answered

2014-12-06T18:22:49.308-08:00

As I drove to the hospital the early morning of February, valentines day I had tears streaming down my face. I just got done talking to Jon's PM&R doctor and she told me to pack a bag and head to the hospital because we will be staying till they could figure out why Jon was having these tremor like symptoms. Jon was moaning in the carseat. I pulled up to the e.r grabbed Jon and headed inside. Repeatedly I was telling him "I am so sorry buddy, they are going to figure this out." As the ladies at the desk seen me they said they were expecting me and called for the nurse to take us back. As the nurse came to escort us to the back Jon went into the full blown twitching, and gasping for air episode. She took him from me and whisked him into a room yelling for others to come help. I'm standing beside Jon half in a daze and half of me ready to scream for them to just make it all stop. I start crying pretty heavily I suppose because they sent a social worker in to see me. I wipe my tears, I stood up straight as to say I am strong, I'm not crying. Thats when she took her arms and wrapped them around me. I lost it with her, completely and uncontrollably lost it. My tears soaked her shirt. I kept muttering the words "I just want my baby better." About 4 to 5 days after being admitted into the p.i.c.u (pediatric intensive care unit) and being intubated then extubated to be reintubatd the nurses told me to bring pictures of the family in and hang them up. I would get angry with them because I walked around the halls and seen the children with pictures all over their walls, I seen the notes on their wall "days here" 118, 65, 206 ect. That wasn't going to be us! They were going to figure this out and we would be home in no time! When the one week mark came I brought up the picture of all three of them. I was getting more and more angry. Not at the doctors, not at the nurses but at God! Why God, why are you letting this happen I would say over and over! I would ask for pray via phone conversations, via Facebook and anyway I could I was asking for prayer. But guess what I wasn't praying. I was mad so mad. I would often leave Jons room and head to the conference room (I went there a lot) and would just continuously scream out and ask why. I've already lost a son there was no way I could lose another one. I would cry and cry until I had no more tears. I stopped eating. I wasn't sleeping. I was having migraine after migraine. My best friend had her pastor come up and pray over Jon with Justin and myself. I would ask God to just give me insight as he has done many times throughout Jon's life. Our pastor also came and prayed over Jon. Our congregation prayed over Jon. Thousands of people around the world prayed for my little boy! I closed my eyes, I cried but I didn't pray. That is until Jon was extubated again. He started having the tremor like symptoms and they hurried to reintubate him. That was when I went to the conference room, fell to my knees and prayed. Prayed that God would just heal him, have him feel no more pain, to make him completely better. The next day is when the doctors told us we needed to talk to the palliative care team. Now after all these months I felt God didn't answer my prayers. But in reality he did. I have come to realize God answered my prayers 100%. I wanted Jon healed, back in my arms and things to go back to the way they were. However that was not Gods plans. He did heal Jon, completely and wholly Jon has been healed! Jon is not here in my arms he is in a place far greater than I can imagine. Its not the way I wanted it to go but as it says in Isaiah 55:8 "For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. God truly has a plan for everyones life. I may not understand it. It doesn't minimize the hurt I feel here on earth. But I know ultimately Jon is happy. He is with his twin bother now. He is no longer in pain. [...]



Jonathan Joseph Shigley

2014-04-08T14:47:42.595-07:00

THis is going to be the hardest post I will ever have to write in this entire world. I don't even know how we got here or why. Its been 2 years since I last posted. So much has changed in 2 years. Jon turned 6, Leah 4 and James just turned 2 a month ago. They have all grown, been healthy and happy for the last couple years. Jon started therapeutic riding at a new place and loved it. We did another round of HBOT. Went on many trips including a cruise, which Jon enjoyed but not so much the heat. Jon was approved for his eye gaze which he totally rocked on! HE was so smart and such a super star. ALways so happy and LOVED being around his sister. Leah continued to help with Jon by reading with him, letting him lick her ice cream, singing with him, and playing with him. THe best of friends! I would say forever and always they will be the bestest of friends. This past September 2013 Jon started having "pain." This pain was sporadic and sometimes he would get into this backwards c position. By November we were seeing it often. Jon couldn't even sit in his carseat the pain was so bad. We started seeing his pm&r doctor first we started him on valium to which it helped some he wasn't crying anymore but was still not himself and in this backward position. Then the valium was just wearing off and we had to increase it. By christmas Jon was just not his happy self we would have bad days and worse days. We were seeing his dr once a week. Trialed artane for a couple weeks to no changes so that was dropped. We planned a trip to Disney, Jon's favorite place in the world the end of January. We flew and Jon was miserable the whole flight. Once we got to our condo he seemed to turn a little bit of a corner. We seen a smile, a smile we haven't seen in a long while. He still couldn't sit in the carseat as this caused him such pain. We went to Magic Kingdom and I seen the look on his face and said to myself this isn't our Jon what is happening to him, why can't anyone figure this out. I want his beautiful smile back, his laugh, his happiness. I watched as he watched Leah greet the princess and as she ran to him and said "Jon want to see the princesses too?" He would smile for her but he was in pain but he was trying to hide it from her from all of us but I knew, I seen it and it broke my heart like nothing else. We got back home and I texted Jon's dr and told her we need to fix him this isn't fair. We went in to see her and she thought he had a hip pop out of socket. And for the first time I felt o.k because if this is what was causing this pain then lets fix it and get our Jon back! Justin and I went to the orthopedic surgeon and they took an X-ray and they said it might be a hair out of line but nothing that would be causing this sort of pain. So another knock down another "I don't know what could be doing this" another tug at my heart because I can't figure it out. I ALWAYS with God's help could figure out what was hurting, bothering, stressing Jon out WHY NOT THIS TIME?!?!?! WHy couldn't I figure this out? I have always stayed up late 1,2,3am researching for the next big breakthrough with CP, new therapies, new alternative ways to help him and now I would sit and research his symptoms and anything that would pop in my head. Jon normally was a healthy kid he got minor colds but never the need for prescriptions or hospital stays (2012 he was in the hospital for rsv. He was there for 3 days needing a little o2 and meds). His pediatrician would often say whatever we are doing we are doing right because a child with a compromised immune system and a sister that goes to school we would normally be in the hospital or at least on different medications for whatever germs Leah brought home. SO this time I was truly stumped. On Febuary 14th 2014 Jon was having this severe pain with this weird breathing he started doing about a month before that would last just a little while and go away. I gave him valium 5mls nothing happened. THen gave motrin a couple hours later he started shaking and I was saying Jon, Jon and when [...]



The kids

2014-04-08T14:51:11.873-07:00

A house of five makes for some fun and crazy times! Oh how I love this life that God has blessed me with! Jon will be 5 tomorrow, I can't even believe it. He has come so far from when he was born even last year. He is so happy and loves his sister and little brother. He absolutely adores Leah right now. She reads to him, plays with him, tries to give him drinks from her cup, kisses him and sings and dances for him. She is very protective of him too. Always telling people to be careful with him and lets people know that it is her brother. She loves him so much! Jon tolerates James but James likes to crawl on him and Jon doesn't care for that too much. But when James is cruising around in his walker he thinks that's hilarious. Jon is doing better with trying more food of a liquid constancy. He takes spoonfuls of milk, soup, ice cream and gravy. He enjoys chocolate the best!! He is still very skinny and trying to get weight on him is a constant struggle as he can only consume so much before he vomits. He loves watching Leah eat and I think that is his motivation. He just finished another 40 dives of hbot and we seen some results of spasticity reduction but the best thing was overall health! He came down with the flu and we didn't end up in the hospital!! He went everyday in the chamber and his cough would disappear until he came out. I believe it opened his longs making him able to breathe easier. So a total of 160 dives we have done. We think we are going to try another 40 then step back and evaluate. It's out of pocket and it has reduced spasticity and has helped his speech and overall health those are all huge advantages! His developmental specialist is totally on board and she said that she now recommends hbot since she has seen before and after with Jon and that it obviously works! We still would like to do stem cell with him but are trying to find a trial so he can use either Leah or James's stem cells. I would like to do this soon as possible because the younger the better! Jon has been using his power wheelchair and has been sitting it longer. I still want him up for the fear he will one day not want to get up and try to walk. He walks in his kid walk and uses the pony more for standing than walking. We are in the process AGAIN for getting the eye gaze there was a big mishap and paperwork was lost and not completely filled out so we have to start over. He has been playing on his iPad and loves that. He is getting stronger and says ya and loves watching th three stooges. He is really com unit caring with his eyes to say where he wants to go or do. There was a day we went to therapy, hbot, and as we walked in he started to cry. I wasn't sure why but said let's go pick out a movie to which he smiled. Then we walked over to the chamber and he cried again, that's not usual. So I asked him what do you want to do he looked at the door I wasn't sure what he was trying to tell me or I was just in awe. So I laid him on grandma to go into the chamber where he really started crying so I picked him up and said what do you want and he looked at the door. I said do you want to leave and he smiled. I was a little worried but incredibly proud that he was able to communicate that to me!! Once we got home I thought about why he would have been upset and come to find out I think it was his ears. He was sick and the pressure probably was to much for his ears. We went on vacation the next day and we were gone for about 12 days so when we came back to hbot we walked in and he was his happy, smiling self! Leah just turned 3. Wow she is so awesome, sassy but awesome. She is the greatest big sister and so great with her brothers. She is definitely a little momma. Like I said she is very protective of Jon and with James she just loves to smother him With kisses. I can tell we will have problems with the sharing when he gets a little older because she takes everything away from him. Throughout the day I hear no James that's mine you can't have it! She tries to fee'd him and wan[...]



Introducing James Landon

2012-06-05T18:30:58.528-07:00

I really can't believe I haven't updated the blog since I was 35 weeks pregnant:-/ James Landon was born (38 weeks) on March 9th 2012. He weighed 6 lbs 15 Oz, he was 20 3/4 inches! He had a little fluid on his lungs and was taken to the nesting room to be monitored. He was then given to me and I started nursing him! He was perfect and big, big to us! Jon and Leah came to see him and Jon was reluctant and Leah wanted to hold him! We went home after 2 days. When we got home Leah was calling him "baby duck" we are not sure where she got that from but she was not to happy mommys time was consumed fully by James! I put James next to Jon on the floor and Jon tried to get his arm around James and move him closer! Leah came over to them and took Jon's arm and said to me "Jon don't like baby duck either!" That night Leah made herself throw up and didn't sleep that good. I was so sad and made it a mission that the next day I would involve her as much as possible. The next morning I had Leah help get diapers and change James, she held him and read a book to him! By the evening Leah was kissing James and saying she loves him! We seen the dr. On day 3 and everything was great he was gaining very slowly so they wanted us to come back in a couple days just to make sure he was gaining. We went back and he was still gaining slow and they wanted to check his jaundice level since he was a little yellow. We were sent home and it was terrible weather we were under a tornado warning. About 4 hours later we got a phone call to take James to the hospital because his bilirubin was high! We drove in the midst od the tornado, the hospital was on watch and everyone was in the hallway since every room had a window and the tornado was seen in Ann Arbor. I was crying and told them they had to figure out how to get James under the lights as soon as possible! They were awesome and had the dr come talk to me and tell me it was not serious but elevated and they just want to get the levels down as fast as possible! We were there at 7pm and lights were started around 8:20p. His level was 21 and by the next morning he was down to 14! We were able to go home! The first two weeks were hard! Nursing was demanding he was a snacker. He was always nursing and he wasn't really gaining fast. By week 2 he was back to his birth weight. He was nursing all. the. time. every where we went he was attached. My friends and family said "wow he is always eating"! By week 8 he finally slowed down and was sleeping more at night and his weight was WAY up! At 2 months he weighed 11 lbs!!!! He is now 12 weeks old and is the happiest baby I have ever met! If he isn't smiling he is nursing! Both Jon and Leah love him so much! He is a perfect addition to our house!



THis pregnancy...

2012-02-14T14:22:11.883-08:00

I am almost 35 weeks. This pregnancy is the easiest of all the pregnancies. The time has flown by except now it seems everyday is in slooooow motion. I never really told the story of how I became pregnant, well I guess we all know "how" it happened but I had the statistic since I was 20yrs old that I could not have children without help. The boys were assisted and Leah was from our stored frozen embryo's. It was at the end July beginning of August we went to Michigan's adventure with my family and in laws. It was a fun vacation and on our way home we stopped at burger king. We went inside and I had this really funny feeling, like nausea. Justin looked at me and asked if I was o.k. I told him with a smirk it's weird I feel like when I was pregnant with nausea. He laughed and said "well we know that can't happen!" I laughed it off. As we drove home I just couldn't eat the sandwich I felt really sick. We got home and my parents were with us so I took Justin to the bedroom and said " I think we need to get a pregnancy test" I will never forget the look on his face, a look of are you serious? Well Justin went up to the store and bought a regular test and I took it and it had one really strong line and another line but it was faint. I called my friend and said I don't know what to think! I told her and of course she was so happy. She said two lines no matter how faint meant I was pregnant. WHAT? HOW? Will the baby be o.k? Is this going to be an atopic pregnancy since the reason behind my infertility is blocked tubes? 7 tests later and all positive! I bought the ones that actually read "pregnant" "not pregnant" I made an appointment with the high risk team at u of m. They had me come in and I was about 6 weeks along and we got to hear the heartbeat, a beautiful strong heartbeat! The baby was in the right area. I had such emotions. I didn't know if I could do this again what about Jonathan and Leah how would they do with another sibling. How will I handle Jonathans therapies and make sure he gets the time he needs and help he needs. I was feeling completely overwhelmed. Justin was so happy. The friend that I called about the test I called again and told her how I was feeling and she was such a great support person and still is! The week before we went on vacation I went clothes shopping with my friend for our kids and as I looked at the baby boy clothes I said " I would some day maybe like another little boy but just not right now" I always think of that and how God works in such mysterious ways!! We still laugh about that today!I developed gestational diabetes again, got a cerclage which will be coming out next week and did the progesterone shots. This pregnancy has been completely different than the other two too. Even with Leah there were similarities with the boys pregnancy. I had heartburn with this pregnancy but also threw up a lot. It stopped around 13 weeks and got a huge burst of energy. I never had any restrictions and have lifted Jon and Leah with no problems. I felt flutters around 17 weeks and at 19 weeks we found out we were having a perfect little boy!! With the other two pregnancies the placenta grew anterior so the kicks were felt but from the sides. This pregnancy the placenta grew posterior and have felt everything, from kicks to stretches and couple punches here and there. He is so active and I love it I loved this whole pregnancy. AT about 32 weeks I noticed I was slowing down and up until about 33 weeks we were going on mini trips with the kids to the hotel/waterpark. This weekend we are going again to a hotel for a get away and to get my maternity photos! I am now 34.4 and getting daily NST and signed consent forms today for a vbac birth. I am also having a midwife and going to start in a birthing tub and then try for the vbac. Of course things can change and if baby needs out I will get another csection and I am o.k with that too. Whatever gives us another healthy baby![...]



Jon is 4!

2011-12-21T09:39:27.147-08:00

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So I win slacker mom of the year! Jonathan turned 4 on november 22nd and between colds and being pregnant I am just now getting to this post:-(


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I am in awe that my little man, the baby that wasn't going to make it is 4 years old! He is my hero and he is doing great! We had a heck of a set back with him getting a cold early november then it turned into something nasty we are still unsure but it lingered its ugly head till the beginning of Dec.! Of course this came at a time when his 4 yr check up was due so his weight was not so great. However his developmental specialist thought he is doing awesome!

His speech is really coming around he tries so hard to mimic our mouth movements in order to say the word! He is very good at ya and more. He is drinking about 3 to 4 ozs from a sippy cup (chocolate milk) and LOVES it! I really think it helps him watch his sister!

He is getting ready for his power wheelchair to arrive and we are on the hunt for a van! Next year Jon will be in school full time and this freaks me out but I do know he wants to go as I ask him and he grins and says "ya". He is growing up so fast maybe not physically but he is so darn smart! I can't wait till we get his eye gaze device so he can show the world just how smart he is.

He loves his sister so much and she loves to help him every chance she can! She now wants to "pick him up" however that isn't happening any time soon, lol! She helps him walk with our assistance, gives him his sippy cup, reads to him, dances and sings for him (he thinks that is hilarious) she is such an awesome kid they both are!

Jon knows he is getting another brother not sure how much he "gets it" but he knows another baby is on the way! He is the best big brother and I just know that he will love his baby brother so much!(image)



Leah is 2!!

2011-11-10T15:41:01.225-08:00

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Leah at 1 month old!








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Leah almost 2




Leah turned 2 on the 4th! SHe is an amazing little girl with so much spunk and attitude. She is very busy never sitting to long in case she misses something. She is even more involved with Jon and still kisses him a few times throughout the day. They are the best of friends. Her vocabulary is out of this world and she is learning her colors and is getting very good at recognizing them. I need to be more diligent about potty training because she would have it down but I am not staying consistent so I need to work on that. Her appetite is good and she is starting to get picky but if she doesn't like it she just won't eat then 10 minutes later asks for a snack! She puts her own shoes on and picks her clothes from a choice I give her. She loves pretend play, cooking is her favorite thing. COloring is another favorite of hers. She draws all over our picture windows but she likes to clean so she gets a wipee and cleans it off:-) She is not shy at all and says hi to everyone she would even talk up a storm if you listen. If she doesn't agree with what you say her thing right now is saying "bad mommy, daddy, papa, mimi ect but never Jon she says he is always good! She also has started about a month ago telling us she is crying. She will come to me and say "mommy, Leah is crying" so then I say why and she comes up with some doseies! Like nemo misses me, which means she wants to watch it, or my tummy is hungry! She is a riot!

It is still hard to believe she entered this world two years ago and so much has changed and to watch her grow is amazing. God has been good to us that is for sure!

Happy Birthday sweet Leah Marie!



Baby boy #3!!!

2011-10-27T18:04:47.231-07:00

I am excited to announce we are having another baby, a boy!

I am 19 weeks along and everything is going great. Again I have gestational diabetes and it was detected early on. This pregnancy was so different then the other two. I was so nausea and threw up which didn't happen with either of the others. I am feeling pretty good these days and it is going by so fast. I am sure having an almost 4 and 2 yr old helps make time fly:-) I again got the cerclage and doing the progesterone shots.

Leah wants to kiss my belly every day and says "baby in mommas belly" I love it! We had our big ultrasound last week and everything looked great. I am being seen every two weeks for cervix measurements and ultrasounds.

We know his name will start with a J but that's all we have now:-)



It has been so long!

2011-10-24T12:03:32.550-07:00

SO we went to Chicago a few months back and I wanted to share some pictures with you! We had such a great time and the weather was perfect!


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The kids on the ledge in Sears tower!


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The kids favorite part of Chicago!!

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THis dude rode in the elevator with us!!



So far behind!

2011-08-27T11:39:51.011-07:00

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I have really slacked this year in blogging. However no news is good news! Everyone is doing great and we are thoroughly enjoying this HOT summer. Here is a break down of the things we have been doing..

-We went to visit my aunt and uncle in Tennessee in July. I love the mountains and the kids loved going on the nature walks.
-We went to Michigan Adventure were everyone has a great time! We went with my parents and Justins parents it was really fun since Jon did get to go on more than the merry go round:-)
-We stayed in Frankenmuth for the weekend. One of our favorite go to places with the kids.
-We leave this monday for a vactation to Chicago and then Wisconsin Dells.
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Jon is doing awesome! He is really getting the hang of his power wheelchair, we should have it in about 3 months. So now we are on the look out for a van so we can transport it.
Leah is a hoot! Her vocabulary is astonishing! She makes up for what Jon can't say. She loves him so much and often times I will find her rubbing his head and singing twinkle twinkle.

I promise to update with a better post soon. Its almost fall here so we won't be going out much more.



Cedar Point!!!

2011-06-14T05:26:35.372-07:00

Oh my word does time go by fast with two kids! With therapy, and summer we are hardly ever home!So we bought season passes to Ceder Point in Ohio. I knew Jon would love the shows but was a bit skeptical about Leah not sure if she would like the kiddie rides. We started by just walking around and then Leah said "go on" so I went on her first ride and it was history from there she went by herself most of the time after that. This made me realize she is already being very independent which of course is awesome however depressing because time is flying by so fast so completely fast:-( Jon loved watching Leah get whipped around and of course she was screaming with enjoyment which made Jon laugh a bit more! I do see however him look at her as to think why is she getting to do these things and I can't. It does break my heart as I do try to get him on a few rides but with him not being able to sit up there is a very limited amount he can go on. When the attendant does let us get on a ride with him, like the antique cars, he was in heaven! He tried with all his might to "get" sissy. All I think about is if this boy could walk she would be in so much trouble, or he would be from picking on her all the time. We have a few vacations up our sleeves this year of course our one every year vacation of Michigan Adventure and I am pretty sure we are headed to WEst Virginia again for some white water rafting. I believe my family and myself and kids will be heading to Tennessee for a week to visit with my aunt and her family. And we are hoping to get some nice camping in here soon! I am going to try and post more but we shall see how that goes:-)[...]



18 month check up!

2011-05-25T18:54:55.527-07:00

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I'm am such a proud momma!

we went in to have Leah's 18 month check up and she is doing great! Dr. M was really impressed! Her and I talked for a bit and Leah just was talking away so Dr. M said she clearly knows more than 10 words which is what the typical 18 month old knows. She then asked me if Leah understands me if I were to ask her to stick out her tongue, in which Leah stuck her tongue out at the DR. Dr. M then just starting asking her the questions! She asked her "Can you try to jump"? And Leah did! Then dr. M and I started talking about Jon and Leah preceded to sing Twinkle twinkle, dr. m said "o.k that is great"! So as we were wrapping up I asked Leah to get her coat and put it on and she did (she can't really get it on by her self but she tries) and dr. M said that is something that usually comes around 2.5 yrs old too! SO she said all in all LEah is at a 24 month vocabulary and about a 36 month fine motor skills! Not to shabby for a kiddo born 5 weeks early:-) We still said no to shots and will continue to say no. She is officially a wee bitty thing weighing in at 21 bls and in the 60th percentile for height at 32 inches! I am so proud of her and Jon I guess it just what I am good at, birthing beautiful smart kids!



Leah is 18 months!

2011-05-06T18:33:53.681-07:00

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Gosh time has been flying by! Leah turned 18 months yesterday and she is growing leaps and bounds! I am astonished by her vocabulary and the way she looks at things to figure it out! She says please (peez) to almost anything she wants. She stared about a month ago putting two words together momma peez, no down, she has said bu bye for a long time,and bubba no. Its just amazing how "typical" she is.
She also loves eating! Things like spinach and artichoke dip, grilled salmon, spinach fettuccine alfredo, zucchini, corn and carrots she is going to be/is high maintenance! She does not like hamburgers, breaded chicken, fruit unless its prunes, not to thrilled with any breakfast things either.
She is sassy, really sassy. We have definitely hit the terrible two's early! We can not go anywhere for too long and forget restaurants it's take out for us! She is so busy and such a monkey. Just the other day I turn around from putting dishes in the dishwasher and there's Leah straddling the baby gate, I stood there in totally shock not wanting her to freak out and fall! She has a very short fuse and wants it her way or else! (image)
She is a lover though too! Still to this day every morning she kisses Jonathan and now says "wuv you"! She is always trying to help him sometimes to much. She gives the best hugs and once in awhile she gives the nicest, wettest kisses!
She sleeps like a dream! To bed at 8pm and up between 7 and 8. She also takes some great naps.
We go for her 18 month well baby check up next week and even though she is another skinny mini she is totally healthy, full of life and laughter. I wouldn't want anything any other way!!!



Family cruise 2011

2011-04-04T18:39:30.840-07:00

So we were scared that Jonathan wasn't going to be able to make the cruise due to rsv, however with God's hand over him and a lot of prayer he did get to go! W ehad so much fun. My parents,brother, aunt, uncle and grandma went! We flew to ft. Lauderdale, fl and then headed to Miami. We stayed in a beautiful condo that overlooked the ocean, mind you we left 20 degree weather and woke up to 80's! Then we headed to the Keys, I love this place so inviting and fun! The next day we left on the cruise ship, Royal Caribbean to the Bahamas! The first day was a bit hectic trying to get everything situated but after that we settled in and it was smooth sailing, no pun intended! The best part was getting the kids ready for bed and we would lay Jon on the bed and Leah would "attack" him with kisses, oh I love that so much and so does he!! By the second night I would honestly say about 1/4 of the boat knew Leah by name! She would say "hi" and "bye bye" to everyone including blowing kisses to every other person she met. They had a nightly band and dancing, well little miss Leah had to be center of attention and dance too. She would have crowds coming to see her dance and my little sassafrass had NO shy bone and she can definitely shake it! They also do nightly pictures and I think this might have been Leahs favorite time because after the first night the same photographer would say "Leah do you want your picture taken?" Leah then would say "down" and run over there and start posing! I think everyone had a blast the only downfall was coming home we had a 4 hour delay and didn't end up getting home till 2am, not fun with kids! We can't wait to do it again next year but next year will be the Disney cruise, YAHOO![...]



Pneumonia and RSV!!

2011-04-04T18:15:00.957-07:00

So we finally got it! RSV is no fun at all. Jon started coughing which wasn't to bad but by the third day he seemed really hot so I took his temp and it was 102, o.k so off to the e.r! I HATE going to the hospital but knew we had to do something since his cough was getting worse and the nebulizer, inhaler, and cough syrup wasn't doing a dang thing! We were up to back to back treatments every 3 hours with no end in sight! So when we go t to the hospital his temp. was 104.9 and coughing so hard. They did the breathing treatments 4 in a row and it seemed to calm the coughing, they started steroids after the x-ray showed pneumonia too. We were admitted and to tell you the truth it was the first time we didn't hear anything about his weight or nothing negative! The dr. was actually the same one we seen in 08' the last time we were in the hospital! She remembered us, not sure if that is a good thing or bad! But she said she would never forget us because of how much she seen the love I had for Jon and wasn't going to give up on try to help him. (If you go back to 08' post of hospital I did a lot of crying) She said she was happy I told her about the cp growth chart and she now uses it and if the child is not losing weight she totally understands that growth is very hard for these children! So we were there for 3 and 1/2 days! We did hbot the next day and then the following day and even though the doctors said he would have the cough for a few weeks it was gone, completely gone after his 2nd treatment! We are also very blessed that even though Leah played with her brother she never came down with it! I truly believe not exposing her to ALL those vaccines has helped her immune system so much!



HBOT video

2011-03-09T20:06:46.797-08:00

Here is a video of a mom that did hbot with her daughter! The results are amazing. We have done 80 sessions with Jonathan and would love to do more because yes we also have seen some great results. The sad part is is that its not covered by insurance. It cost roughly $5,000 for 40 sessions! We need help. We want Jonathan to get another 40 sessions. His muscles spasticity has decreased, his speech is coming along, he is so alert and so smart. This therapists comment all the time about just how much this has helped him. As a parent you want to do everything for your child. So we are asking for donations, in any amount! This money will go to another 40 session and if we get more than the $5,000 it will help with other therapies that have helped him, like hippo-therapy (horseback riding), cranial sacral therapy and massage therapy all these things help him but all are out of pocket. So please consider donating.



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Having fun

2011-03-05T19:25:29.353-08:00

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My the time is going by so fast! We are just enjoying life and having so much fun in the process. Leah is 16 months old and is very busy! She talks all. the. time. and I love it!! You can often hear her say hi and bye bye to everyone she has NO shyness to her! She likes to say all done, momma dadda, bubba a lot! Her vocabulary just goes everyday! She knows most of her animals, she knows her body parts especially her bum bum since I tell her she needs to sit on it when she is by her brother!! I love watching her interact with Jonathan. He is really into the pacifier again and when it falls out she says "uh oh" and goes running to put it back in his mouth but not before she puts it in her mouth then says "no" and puts it in his! She cracks us up she is such a crazy funny girl. She is a climber and it scares me so! She is into EVERYTHING and is always going and saying something!

Jonathan has been doing really good! We kicked up his therapy after out HBOT was finished and it seems to be helping. We started feeding and he is doing really good. He can now eat a fruit loop and doesn't gag he chews it pretty nicely! We are working on some great oral exercises that I think are really good for him! The therapist asked Jonathan the other day to put his tongue over here( toward her right then left) he did exactly what she said. He surprises me all the time!
He is doing really good with his power wheelchair we will be taking it home tuesday and using here. We have him using his head to go left and right and of course straight and he totally gets it! Since he is right side dominant with his head sometimes it gets hard for him to look to the left and then he goes in circles but he thinks that is hilarious! Our wheelchair specialist said "before I leave my job all I want to see is my buddy Jon use this wheelchair" well he didn't expect him to do it the first day!! Way to go dude, I love you Jonathan! So he isn't proficient and in no way could he go out on the street just yet but he will get there and he proves that to us with every day he practices!



15 month check up

2011-02-11T18:28:36.264-08:00

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Leah had her 15 month check up this past week! She was 19 lbs 14ozs and 31 inches. So tall and skinny. the doctor was happy with all her developments and said that most 15 month olds say between 5 and 10 words so she stated that LEahs vocabulary is really taking off! In my opinion she is always "talking" she is so happy when she is doing what she wants! She continues to be sassy, she is a handful if we go out anywhere. So we have decided that quick meals no dining in, its toooooo hard! She is as cute as a button and knows it. She says hi to everyone and when she is ready to leave she states "byeee"! She loves being the center of attention! She also LOVES her bub (Jonathan) she is always doing something to make him laugh! She loves dancing right now she spins and waves her hands in the air and is now trying to jump! She is a great eater and LOVES pasta, bread and cheese! She started swimming lessons and seems to be a natural in the water! She had her first play date with Zoe and Mia, two great little girls. THeir mom and I have actually become good friends. Can't wait for more "dates"! (image)



Developmental Evaluation 2011

2011-02-07T20:12:26.891-08:00

SO I stressed and stressed over this appointment. I get so nervous about what Jonathan should be doing and what he is not doing, how he needs to gain more weight and blah blah blah. Well it went far way far better than I could have imagined!We arrived at the PM&R office and I do LOVE this doctor she is very well educated on cerebral palsy and the different options we have, in regards to spacticty, pain, therapies ect. So at a developmental appointment we see pm&r, dietitian, social worker, p.t, o.t, s.t, orthodics guy psychiatrist and a special education teacher! This appointment lasted 4 loooong hours but I loved it! First we started with the dietitian and she looked at the blended diet I have Jonathan on and she said" where did you get this recipe"? I said I educated myself and started natural supplements and organic foods(liquids). She said "hmm, well your doing everything right, he gained 2 pounds in 2 months and he has all the necessary vitamins minerals and food groups!" His growth chart looked pretty impressive on the cerebral palsy curve, he was in the 60th percentile for weight and 97th percentage for height! She had nothing to add and told us to keep up the good work!Next we seen our favorite doctor in the world! She had two interns with her one from Duke hospital and one from Cincinnati Children's hospital! She said to these doctors "We have 5 patients today and of all the patients you see I want you to hear this little boys history!" She went on to tell them about being a preemie then coming home doing everything on target getting the rotovirus vaccine, going blue needing blow by oxygen and then 1.5 months later getting the pertussis vaccine and everything went down from there! SO I even learned something at that appointment, she believes it was a combination of the rotovirus and pertussis vacc. because of the severity of Jonathans condition. The two doctors stood there stunned, I was even stunned that she told the other doctors! They wanted to learn more about Jonathan so we talked for a bit. Then she told them about out "non-conventional" therapies and how well they are working for Jonathan, HBOT(hyperbaric oxygen). She seen Jonathan in November 2010 and he was tight, very tight. We started hbot the end of December and seen her in Jan and she took Jonathan and bent his legs up stood him up and then put him in a squatting position and he used his muscles not tone to lift up and bring his head up!!! The two doctors were amazed and our doctor has said that hbot has worked for some of her kids but not as drastic as it has for Jonathan! She also told them she stands completely behind her prescription for Jonathan to get stem cell treatment! She really believes we would have to do it twice because she has SEEN great results from kids that have completed 2 treatments of stem cells! (Now we just need to continue to pray that we find the right place to go and God will lead us there!)SO for those of you this doctor is an md its not a holistic doctor and she does not recommend these therapies to anyone, she believes Jonathan would greatly benefit from stem cells! The two other doctors in the room were besides themselves for the next few minutes with us, asking million questions about hbot and stem cells, it just proves that doctors "practice" medicine they don't know everything!Next we seen the social worker, psychiatrist and teacher. They preformed a cognitive test with Jonathan and he had 3 options and then he had to pick the picture they would call out using his eyes and a couple other things. They then had us wait (outside the door[...]



Little stinker!

2011-01-23T20:42:49.852-08:00

Well Leah is only 14 almost 15 months old yet we are introducing the potty!

She will NOT keep her diaper on! We have even started putting them on backwards and that has seemed to do the trick for most of the time! She will go down for her nap and every time I went in to check on her there she is sleeping with no diaper on! So one afternoon I was watching and caught her in the act! If you notice in her left hand is her diaper going over board!
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So during the day we ask her do you need to go potty and she says pah pah meaning pee pee! We make it this great big deal and put her on the potty she sits and makes the noise pisssss like she is...well peeing! So cute but it only last a few seconds then she is done that's it back to playing!

This is a picture of my mom! The kids get so happy when she is around, they love their me me!

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Just because she is so cute!

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Our 2nd round of HBOT

2011-01-10T18:59:11.985-08:00

So here we are with 15 more dives down, that makes 55 total! We seen results almost instantly. Was it because Jonathan had 40 previous dives or is it because we increased his pressure to 1.75 ATA? Who knows but I am happy. Justin and I are already talking about doing another 40 dives this coming summer (August?) we really, really want to do stem cell but after much prayer I think we are doing what God wants us to do for now! I believe God will show us when we are to do the stem cell, we are ready to go on the next plane however we only will do adipose tissue stem cells, which Jonathan is not "fat" enough to do or bone marrow stem cells. So that limits us to only a selective few places that do this. I guess to see results we and therapist have seen this is the BEST alternative therapy including therapeutic riding. We want to see results and we have so we can't complain just be super thankful for what has and is happening!So the first thing we (us and therapists) have seen was after 3 dives is muscle spasticity decrease. This is huge for Jonathan since he can be super spastic at times! Next we seen him again looking to the right something that is also hard for him to do! He is more controlled in his movement of his arms, which will help when we try out the power wheelchair at the end of this month!! He speech is coming along still not loud but you can watch him try so very hard to mimic what your saying that of course is huge! He has learned "s" he puts his teeth together and hisses, and what we came up with is sissy. So we asked him "can you say sissy?" and sure enough sissy came out and a HUGE smile afterwards! Love it! I can't explain how big this is and I know its only going to get better with time and HBOT!! So this new place we are going to is very different than the place we went to in North Carolina. First, its more money! However I do like the analogy the owner, Tammi said. Where we went in N.C is like a Chevrolet's and here at Oxford its more like a rolls royce! And yes I have to agree. The mono chamber is nothing to compare to a multi chamber! We need no ear drops, no nasal sprays, no temperature checks, and no checking of the ears! Why? Because it is so easy to get to pressure, my ears pop maybe 2 to 4 times and Jonathan doesn't even flinch. It takes about 10 minutes to get to the 1.75ATA then we stay at that pressure for 1 hour then it takes 10 minutes to come back up, so a total of about an hour and half! We watch movies and let me tell you that Jonathan is such a different boy inside the chamber. I challenge anybody that knows Jonathan to come up to Oxford and see him and tell me he looks the same! This boy is moving, swinging his arms like I have never seen, moves his head left and right, its amazing, NO, it's unbelievable! Justin came up one day and wanted to see what this mono chamber was all about and was floored at the little boy he was looking at. This day that Justin came up was a hard day, for me! Jonathan wanted to roll all over me, he kept hitting me in the face and then was turning his head and trying to bite my clothes (which is something he is making a habit out of in the chamber)! I am still in awe that he is like this at that pressure but as soon as we come up to room air he is less spastic for sure but he just can't do all the rolling, hitting and just the way he moves is not the same as if we were at 1.75ATA! Why did we choose 1.75 instead of 1.5 ATA because the owner at Oxford has seen some marvelous things happen even in her own child! They work with do[...]



Lets close up 2010 and bring on 2011!!!

2010-12-31T06:59:55.018-08:00

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Man 2010, What an awesome year! I think this is the first year I can say we have lived normally!! We take the kids everywhere and just enjoy being a family! Jonathan did get a pretty nasty cold but all is well and both kids are very healthy. we did a lot of trip this past year and already planning next year with a cruise and going to sesame street! Jonathan is doing great with hyper barics oxygen and we already see results, muscle tone is so much better and he is taking such better steps! Its nice to get a therapists sight on this and she agrees with how much it has helped decrease his spasticity! It looks like stem cell is on hold again as I am really trying to go to Germany but nobody is calling us back so obviously this is not our time to go. We will start fundraising in the coming year including a car wash and selling tshirts!

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Christmas was so much fun. Both kids loved opening gifts and Leah helped bubba open his!
Both kids love each other so much they get along great but of course Jonathan gets a bit irritated when Leah comes and knocks down the blocks I made for HIM to knock down but because he is such a lovie he just laughs it off! Leah is sassy and very determined with whatever she has on her mind and it is almost impossible to distract her! I have been reading love and logic and so far it has helped not only her but us from ALWAYS saying NO!
Well I can't wait for the new year to begin because I just know it will be great! I LOVE MY KIDS and am so happy to tell the whole world (well, world wide web!)!



Thanksgiving and kalahari

2010-12-16T19:10:49.231-08:00

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Time is flying by!

2010-12-07T18:45:13.442-08:00

Where is the time going?!
We are really enjoying the last bits of 2010! We went to great grandmas for thanksgiving and enjoyed visiting the family. The kids are getting big, o.k well Leah is getting bigger but they are both getting smarter and cuter. Leah's hair is finally coming in and has a few strands in her face but I refuse to get her a hair cut yet it actually would be pointless its only her bangs, that's what barrettes are for, right?! We went to our annual Christmas play while my cousins watched Leah and grandma watched Jon. Justin and I have been spoiled with our "sitters" and have enjoyed spending some quality time together! We just got back from Kalahari and already planning our next trip. This place is the best, something for everyone. Jon LOVED the lazy river the water was very warm as well as the wave pool. Leah liked the kiddie land the best and they both are like momma and enjoyed the hot tub!! This place was very awesome with a swim up snack bar and bar for those virgin drinks for me! They have 9 slides not including the kiddie ones. Of the 9 slides 3 were family rides for 4 people. We went with our friends and their children and my friends would take the kids so we could enjoy some of the rides! They have some great deals on their website (www.kalahariresorts.com)and actually the room we were in (the two room family suite) usually goes for about 400 a night and we got it for 110 a night!! We stayed for 3 days and our friends spoiled us with a private hut, all the other visitor have to mingle with each other however if you have a "hut" its your own with flat screen t.v, refrigerator, two couches lounge chairs and of course room service! This made it very nice for nap time! The food was delicious and desserts were even better! We just had a lot of fun with really great friends! I will upload pics as soon as I can!



3 years old!

2010-11-23T18:15:40.720-08:00

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Happy birthday to my little man. To a little boy that wasn't supposed to make it! You beat all odds, you are so strong and a little warrior. I love you so much. You have shown me a world I would have never known, I have met people I would have never met I am a better person because of you. I see the world in a different view. I love you for you! I want to make your world the best it can be. I want you to experience everything. I want you to love the person you are, I want you to love life and I will make that my life promise to you, to make sure you live life to its fullest! You not only make me proud but daddy too and everyone you meet. You have have made us so proud of everything you have and are achieving. You surprise us constantly. This year has been the very best, you have come so far. I can't wait to see what this new year brings. I can't stress to you how much I love you, and how everything seems all better when I see your smile and you give me nice sloppy kisses! Jonathan, you are the best little boy a mother could dream of. I love you till infinity and back!

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Love you dude,
Mommy