Monday, April 7, 2014

Jonathan Joseph Shigley

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 he stopped shaking he was out of it. I texted his pm&r doctor and let her know what was going on. I gave 5 more ml's of valium, nothing. at 7am his pm&r doctor called she said she was calling the hospital and to be prepared to stay so they could run tests. I got Jon into the carseat which he cried so hard and had that awful breathing. Walked through the doors and they seen him took us back immediately. It all seems like it just happened yesterday. I heard someone yell, he is having a seizure we need to intubate him! Someone else came over and yelled we need to knock him out what should we give him. I was crying hysterically watching them poke and prod my baby. At one point I heard them yell "we are losing him" I thought those were the worst words I have ever heard but it wasn't. They got him intubated. Did a cat scan and mri then told me they were admitting him to the icu. HE was so drugged up he was sleeping but he looked so comfortable. One of the nurses took a warm wash cloth and washed his face and got all the yuckies off his face. then she gently caressed his hair and said "you're all clean little buddy now just get better" and I cried because thats all we were suppose to be there for for him to get better! They had him on valium, fentynal and xanax. They ordered an eeg, an ultrasound and X-rays to which all came back normal. They did blood work and swabs to which came back positive for strep and pneumonia. They put him on antibiotics. They told me 2 days later they were going to wean him from the medications and then extubate him. They successfully extubated him and he had his eyes opened but still not really with it. Jon then started the twitching and breathing again. The doctors wanted to try other medications to see if we could control it. I don't even remember the meds but they tried one and after 5 hours there was no difference. They tried another and again we had to wait till its peak and still nothing changed. Jon was in so much pain, crying and twitching I could only hold him and rub his head and tell him how sorry I was. At that moment I felt like a complete failure. How could a mother not figure out why their baby was hurting, how do I just sit and hold my baby who is crying out for help and all I can do is rock and repeatedly say "I am so sorry" After 26 long hours and many trials they reintubated him and put him back on all the medications. Again he was sleeping but comfortable. The dr wanted to do a bone scan were they check his skeletal systems and see if there is any hair line fractures that might be causing this. We had pediatric and adult pm&r doctors coming in, neurologists coming in both saying it was the other that was causing it, neuro would say its because of his muscles and pm&r would say no way muscles don't just do that especially in a kid who's tone was always managed well so it must be something in the brain. we then trailed dantrolene but they said it could take up to a week to see results but after a few days we should see something if it was going to do anything at all. The bone scan came back normal. I asked them to check his micro nutrients (acids, vitamins and minerals) since I make all his food maybe I was lacking something. THey agreed but said they had to send it out to get tested since hospitals normally don't check those and it would take a couple days to get the results back. They wanted him to rest a little longer this time until they tried extubating. After being there for a week they re swabbed for the pneumonia and strep to which both came back negative. They were ready to extubate and did successfully. They started weaning the medications more and more. There was a point that the nurse asked Jon "do you want a popsicle" Jon stuck out his tongue. I was so excited a glimpse of him responding was such a relief. He licked the popsicle then got a sponge bath. the dr.'s then had p.t come up and do some stretches with him. They were talking about moving us on the regular floor. Finally a step in the right direction. Jon was still on some pretty hefty amounts of medication so he slept a lot. Lisa was our nurse that day and she was one of the best nurse that we connected with and she was awesome with Jon. Lisa told me I needed to hold him. It was 3 days without holding him so I was ready. I held him and looked at him, so perfect, so soft my baby. Then he started twitching and having difficulty breathing. We put him back on the bed and I started crying. They couldn't get him comfortable they brought the crash cart in and a nurse was trying to get me out of the room as they were using blow by oxygen. They intubated him again and got him back up on the medications. After that they told me that Justin and I needed to talk with the palliative care people. Where was this going? Why did we need to talk with them? Jon was once again comfortable. The next day palliative care and our dr went to a room to discuss things. One thing was brought up about a tracheotomy and the doctor said it wouldn't work as where Jon was clamping down is above where the trach would be so it would be useless. I then told them to take him off ALL the medications he was on and to start him on new ones. COuld the meds be adding to the symptoms? They said they would have to think about that one since those are the meds most frequently used. The next day they came up with a plan. THey would slowly decrease the other meds and add the new ones. The new meds would be Ketamine, Phenabarbital and epinephrine. THey then wanted to do another eeg, an overnight one. THe eeg came back normal so they told us Jon is not having seizures and these symptoms are like tremors. They got Jon on the new meds and off the others then wanted to again extubate him. This time they extubated him but it only last a couple hours and he needed to be intubated again. They were also having to suction him more frequently which they said was not normal because he wasn't even getting suctioned that much when he had the strep and pneumonia. Then the nurse said we should bring Leah up. To which Justin and I said no. We then thought about it and said it was a good idea since she has been asking about him everyday. She was even at the point of making herself sick so she would need to go to the hospital. So the next day I brought Leah up and the team there took her and explained some of the things she would see. They also gave her a toy medical kit and a stuffed kitty she could work on. Then she came in to see Jon. He was sleeping. She got up on the bed and said "hi Jon. I love you" Then she wanted to work on us including the nurses. One of the nurses asked Leah "Is this your big brother" to which she responded "no, he's my best best friend" She then kissed Jon and papa took her home. That evening they called and said they had to increase the meds as he was twitching even on the ventilator. I went back the next morning and the palliative care people talked with us. They said something( I was already crying so I couldn't really hear) along the lines of he is not getting better and that the doses of medications he is on he should be resting and whatever these tremor like symptoms are are getting worse and the need for more medication is not a good sign. The nurse then suggested I have Jons foot prints done. I knew what they were trying to tell us but I just couldn't believe it. Why, why us? Why did we only get 6 years with him? Why does he have to die?!?!?! The results from the micro nutrients came back normal. Actually the dietician and dr came in to tell us that his levels were near perfect. And that kids on hospital formula (the so called perfect nutrition) don't have this great of levels. It just confirmed that all the late night researching nutrition was well worth it. On Febuary 25th Jon was on such high amounts of medication and they were even giving shots of fentynal via i.v to stop the twitching. My dad, Justin, myself and brother were there. My dad went to get my mom. That night Justin went to pick up James and take him home but was coming back up in the morning. My mom, dad, brother and myself would take turns laying next to him. We would talk to him. Tell him what an awesome boy he was. How happy he made us. How he and Preston made me a mommy. How so badly I wish I could fix it and take him home. What an awesome big brother he was. What a difference he made in people, in the world, in ME. THe next morning to my surprise Lisa was on. She told me I needed to hold him to which I said no way the last time I did he started twitching. She said I promise he won't do that this time. I told her not just yet I wasn't ready. My brother went down to get a little sleep and mom and dad went to go get breakfast. Justin was on his way up. It was just Jon and I. I think I told him I loved him a million billion times and kissed his hand, head, and neck over and over. I then called Lisa in and said I need to hold him. I sat in his bed and she laid him in my arms. I cried uncontrollably. My baby, my little boy, my super star was laying in my arms again. I missed his warmth and his skin against mine. Lisa left. I started telling Jon everything I ever wanted to tell him. How incredibly happy he made me. How I would trade him places if I could, the dreams I had for him, the man he was going to become. I then said some of the hardest words ever spoken out of my mouth. I told Jon that I was going to be o.k, daddy, Leah and James would be o.k and papa would be o.k. That he didn't have to fight anymore. THat he could go be with his brother and Jesus. THat this new body he will have he would be able to run, skip and hop. THat he would have a voice to talk, yell and sing with. That we will all miss him so so much and I will never stop missing him but that he didn't need to keep fighting. After I spoke those words Jon took a big breath and he passed away in my arms. I screamed for Lisa she came in and called the dr. The dr came in and said the worst words I have ever heard, "he's gone" WIthin 10 minutes my mom, dad and Justin were there. Jonathan I will always love you. You were my heart. You were my everything! Everyday I miss you and long to see you again. Love you forever, love you for always as long as I am living my baby you will be!!! Love you Jon and until we meet again.

Wednesday, November 21, 2012

The kids

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 wants to hold him all the time. She started dance class and loves it. Her new made up song right now is shake your booty shake your booty, not really sure where she picks this stuff up. She tells us to chillax and likes to be the boss. She is very independent and usually dresses herself and picks her clothes out, I give her a choice of two outfits. She is very into fashion and loves her hair done. She is getting a longer better with her peers but the sharing is so hard for her. She loves being the leader and is always helping her teachers (Sunday school). She counts to 14. Knows her colors, working on numbers and spelling her name. She gets the L A H but forgets the e. Her vocabulary is astonishing! We get complimented all the time on how well she talks. She can hold a conversation with anyone. We often need to tell her o.k it's time to go. She is not too shy and once she is comfortable in the situation watch out she will tell you about everything. Her imagination is so fun. I love listening to her stories of castles and princesses. She sings so many songs and has an excellent memory sometimes too excellent. We hope to have her in Montessori next year. She is 37 inches and 28 lbs a petite girl but she holds her own! James is the sweetest, happiest easiest baby around! He is 8 months old now. He says momma, dada and waves bye. He crawls everywhere and it seems he is right on track. He is still nursing and eats oatmeal occasionally and some veggies here and there but 90% of his nutrion comes from nursing! I'm So proud that he is chunky(18 lbs) and its all from me!! He loves cruising in his walker and is very curious watching people and taking it all in. He is a tough cookie too. Likes to be thrown in the air and pull things apart. He sleeps well at night getting up once for a feeding but usually goes back to bed. Still no teeth so he has the cutest gummy smile. So I hope to start blogging regularly again however with 3 kids always needing momma it's hard.

Tuesday, June 5, 2012

Introducing James Landon

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!

Tuesday, February 14, 2012

THis pregnancy...

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!

Wednesday, December 21, 2011

Jon is 4!


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:-(




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!

Thursday, November 10, 2011

Leah is 2!!


Leah at 1 month old!









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!

Thursday, October 27, 2011

Baby boy #3!!!

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:-)