What is a mom to do????

O.K I am BORED! Jonathan has been gone since Wendnesday afternoon and actually I was good about him going to Florida with grandma, grandpa and uncle Matt the airport was very nice about letting Justin and I walk to the departing gate to see them all off(after 9/11 they only let you go up to security and you have to say your goodbyes there) it was around Jonathans nap time so I put him to sleep in my arms but then when it was time to board the plane and I had to hand him over I started feeling my eyes swell then of course tears. Now I know his grandparents know exactly what to do, plus after going over everything about 100 times I was not worried about that but this was our first time away from him more than just over night! The gate attendant was really nice he tried pursuading me to buy a ticket and go but I am just way nervous about flying and being pregnant and the what ifs... plus since disney is my favorite spot it wouldnt take much pursuading otherwise! So I gave my baby another kiss and off they went. They had to call as soon as they landed so my stomach would no longer be in knots thank heavens its only a 2 hour plane ride! They got there safe and sound Jonathan slept the whole way except when they were landing he woke cause of the bumps. Of course I call everymorning and every evening to talk to him and see what there doing and how his feedings are going. Friday my mom said he had so much head control that she has never seen it that good. They are definitly spoiling him holding him everywhere and not letting him stay in his stroller (they tell me with it being 90 to 100 degrees he doesnt like the stroller) he's loving ice cream and he loves shamu the whale at Sea World, they went to the ocean and he loved trying to jump the waves with grandpas help, he liked the water park except for his face getting wet and he is pretty much pooped by the evening he has been sleeping good and eating fine so I am happy but definitly missing him. On the other hand justin and I have gone out to dinner almost everynght enjoying stillwater for his birthday! We went camping and slept till 10am which felt awesome! I think I will be a little productive today and tidy up Jonathans room and put away summer clothes and start getting fall and winter clothes out we went shopping (retail therapy is the best therapy) and bought some cute outfits and tomorrow I am going out with some friends and going to lunch and then clean house some more then tuesday evening I go and pick up my sweet boy!!!

Random Photos

These are just some random photos from the last couple weeks. He has been very spoiled when it comes to naps, Jonathan takes a great two hour nap but it has to be on me (my belly) which is starting to be very difficult, but he has managed o.k while his uncle Matt holds him! I think I might want to break this before baby Leah comes!
Another picture of him being spoiled he can't stand it when we go through drive thru, I think a lot has to do with he wants to eat too however this is getting better he is chewing pretty good cause he was starting to get sick of everything being mushy,(he is growing up) he ate a little pita bread and yea he does get a little nervous but we sing him "chew it, chew it, chew it" while showing him our mouths chewing and usually he does just fine. So the picture of my dad holding him outside his carseat while we go through drive thru (unbelievable)!

SWIMMING! I need to say no more this child of fine is a fish. Grandma and grandpa have been taking him in our pool almost everyday, he loves it.

Then we went over Justins parents and put him in the lake with his floaty and he loved it he almost fell asleep in his float because of the waves rocking him! One of the pics is in his carseat with his swimsuit on and he doesn't look to happy but once he knew he was going swim, swim, swimming he was a happy camper! notice how long he is!


Well my parents leave with Jonathan this Wednesday for a week to Orlando, to say I am going miss him is an understatement. I am a little nervous he has spent the night with g&g before for a night but this time a week guess I be doing lots of phone calls! I already have plans of cleaning Jonathan's room putting summer clothes away going shopping to get fall and winter clothes ready and possible buying a big boy bed since we will use the crib for Leah. I still haven't bought a single girl outfit I am still nervous, I think I'll wait for another 5 weeks then I'll be 30 weeks along! I can't believe summer is coming to an end but its exciting because I am still pregnant, thank you Lord and its getting closer to the due date!!!!!

WHY???

This is not supposed to be a depressing post but I have been staying awake a lot at night thinking about so much I thought I would post it and maybe it would help.

Jonathan is doing great, he is now using the honey bear cup and he took some sucks by himself I don't know were time goes but he is sure growing up!
I look at him and he is so perfect in my eyes yet why don't other people see that. Why when we go to the park all the other mommies are chating and I am sitting on the swing just so Jonathan can feel the wind in his hair. Why do I see a mom in the mall with two "typical" twin boys and I constintly think what did I do or not do that I can't have both my boys, why I will have to explain to Leah she had another brother but was just to little to survive. Why do I have to even think about Jonathan going to preschool next year it terrifies me, will he have an aide, will they know what he wants, will he understand that mommy is dropping him off but I WILL be back for him later, he has never been away from me or if he has its been with grandma and papa. Why, Why, Why do I have to constintly fight for therapy? When I get a denial letter because 1) speech is not a nessecity, what the crap does that mean, speech is a huge thing he will be able to talk maybe only a few words or maybe GOD has another plan. or 2) Only needs 2 days a week instead of three days a week of p.t, again what the heck does this so called person sitting behind a desk know about my son, nothing absolutly nothing I challenge him or her to come to my home and look at my son and tell me in my face he is fine and only needs certain days, I didn't ask to use this so called "benefit" of therapy through my insurance if we didn't have to by all means we wouldn't use it, I am not the only one that has to fight for things I read about others of special need kids and its not just fighting for therapies its a fight for EVERYTHING, schools, equiptment, services why is this? I am scared of what the future will bring to Jonathan if us parents have to fight for our kids and for those of us that have non verbal kids what will they do when there older who will protect them, who will be their voice? I really want to start a fund its not going to save the special needs world but if it could help a handful of great, smart, happy, loving kids wouldn't that be wonderful? So if you have any ides on how I would start this drop me a comment I know my hands will be busy when Leah comes but I have a ways for that and if I could just look into it and get some ideas that would be so awesome!!!!! FOr all of you that have special need kids, keep fighting its hard I know but some of these kids have only one voice and thats you and if you do have a special needs kid I compliment you its a hard journey and I don't know you or your child but it doesn't matter your kiddo is great, smart, funny, happy, and it because of you!!!!!

Laura

He's eating!!

Jonathan did great with the pudding and graham crackers he ate it with no problems at some points he would get a peice of cracker and look at us as to what do I do with this but Stephanie just gave him more pudding and down it went. Yesterday I was eating a peanut butter and jelly sandwich with chicken noodle soup and Jonathan was on my lap and of course watched every bite I took I know your supposed to wait till 2 till you give kiddos peanut butter but I tried it anyway, he loved it and had probably a good teaspoon worth then I thought I would try a noodle, I had to work up enough guts to try it cause I don't want him to gag. So I tried a little bite and he immidiatly brought it out with his tongue which is great he didn't gag he knew it was something different but then brought it back in his mouth and CHEWED! No gagging no spit up he did chew it for some while so it was pretty mushy but oh well he did it. I didn't want to press my luck so thats all I tried we'll try again another day. We learned he loves blueberries mashed up really good and sprinkle a little sugar and he thought he was in heaven. I continue to make him high cal smoothies and he has now tried apricots, blueberries, mango and kiwi and seems to like them. Still the majority of his calories goes through his tubie tube but he is doing ten times better then 2 months ago!

Baby Leah is growing she now weighs 1lb 1oz at 22weeks she is in the 55-60 percentage we had a fetal heart echo due to the gestational diabetes actually there is an increase of birth defects with this however her little heart looked beautiful and there is no signs of any defects and surprisingly they did not want a follow up the nurse practitioner said 90% of cases get a follow up just in case. So little Leah is doing good she now kicks frequently and gets hiccups often. Only another 15 weeks yipee!!!

So heartbreaking!

Jonathan is doing great, he did have a cold and lost about a pound but am very confident he will gain his weight back. He has been very active with grandma and papa, they have spoiled him (nothing new) taking him to fowlerville fair almost everyday he really enjoyed the animals but loved the demolition derby, tractor pulls and another day od demolition derby justin and I both went to the last demolition derby and my parents weren't kidding! Jonathan smiled from ear to ear and just giggled when those engines roared he really loved watching them smash into each other laughing and jumping while daddy was standing him up on his lap. Tell me does that sound like ALL boy to you?!! They have taken him to the movies and he did really well it was an imax movie at greenfield village, my parents have a membership there so they go often, I particularly can go once or twice and I've seen enough but Jonathan loves it too so that is great.

Jonathan started feeding therapy about 2 months ago with a new therapist at a new place. His therapist was really surprised at how eager he wants to eat but gagged if you went any further than his front teeth then said he needs to be desensitized sure dude whatever you say! You can tell I was optimistic about anything working because we have tried what I thought of as everything! Well fast forward to now and Jonathan more then ever wants to eat, we will get something to go and Jonathan watches from his carseat and cries he opens his mouth licks his lips anything to get food in his mouth. So as we pulled over I got him out and I was eating a cheese omelet and Jonathan ate all the gooey cheese and just loved it but this happens ALL the time we have even stopped him from being in his high chair when we eat because he doesn't get that whatever is going on in his belly won't let him have more than a couple ounces even though he might reflux he wants to do it again and cries because he wants real food and clearly as of right now he can take pudding like texture and he won't touch baby food not even stage 3 he wants our food! Well yesterday at his feeding therapy Jonathan ate 1/2 butterscotch pudding he likes flavor no vanilla or chocolate he wants lemon, butterscotch, carmel(pudding of course) Stephanie his o.t can now get her fingers all the way back to his molars no gagging no reflux just sits there looking at her (as we are clapping and praising him) as to say "oh this is what you wanted me to do , no biggie" and opens his mouth a little bigger he has done this for the last couple weeks with this week being the best. So next week we will be trying crushed graham crackers in pudding to change a little of the texture. He still drinks about 3-4 ounces of water a day by mouth on top of his blended high calorie smoothies(smoothies by g tube). He also loves sweet tea, thats my boy right there!!! I tried giving him propel a flavored water with just a tiny bit of calories. SO I asked him do you want water, I wasn't lying it is water just a little berry flavor he eagerly opened his mouth happy to take some, as I put it in his mouth he looked at me as though I was poisoning him and preceded to spit it out he thought it was the grossest thing ever he didn't let me hold him the rest of the night thank GOD it was in the evening I felt terrible. I'll let him stick with water sweet tea and a little bit of cola, all I can say is I tried! SO hopefully with prayer and lots of it, he will be able to take the crushed crackers and we can move to bigger things.

It's a......

GIRL!!!

20 weeks along and going strong, I went today to make sure everything looks good and baby looks great she is getting big and had her feet and hands in her mouth. In two weeks they will be doing measurements and weight. I am starting to get nervous any little twitch or cramp I just start praying! This little girl has a lot more baking to do!

Look at my boy, I am so proud!

Ok so I said we were getting a kid walker, well the p.t thought lets try the pony walker and see what happens. I had tears, he was so happy when grandpa put him in it. Jonathan has not really attempted to walk but look at him his head is held high just a rest behind his head he has it up without my help, he was standing!!! Now don't get me wrong he got very tired after about 10 minutes and his head did plop down but 10 minutes is huge, humungous, ginormous o.k you get the point, I am just so amazed at my little man!