"Not flesh of my flesh, Nor bone of my bone, But still miraculously my own. Never forget for a single minute,
You didn't grow under my heart - but in it"

Wednesday, August 31, 2011

Leaps and Bounds

Noah is just doing so much. We can feel y'alls prayers. Right now as I type this he is playing catch with his dad. He is saying "catch", its too cute. Paul ask Noah to bring him the ball. So Noah crawled really fast over to the ball and threw it and then crawled back to his dad. He did this about 5x without ever giving his dad the ball. Then he turnes around and begins huffing really loud like he is out of breath and then laughing. He is a hoot in a half, that boy!

In the month of his not eating his words have flourished. The therapist will disagree with me but she doesnt see him all day everyday. Noah is a stinker, he tends to not show off for anyone which is I guess a good thing except maybe with therapy. He calls for Trin, his big sister. "TRISH!" he screams, lol. He said Charidy. He says ball, no and rawr. He can mimic people as well with words like soft and good. He finds so much joy in everything. Lately he is all smiles and laughs all the time. He giggles a giggle that is so infectious.

Yesterday we had a major milestone. He put food in his mouth on his own. Praise the Lord! I couldnt believe it.

Today in therapy he allowed the ST to work in his mouth. That was good. No vomit for the last few days. Too cool. I think our month is over, finally! Thank you all who continue to hols our family, especially our son up in prayer. We love you all and appreciate the prayers.

I have to say that there is such joy in our home. Our children just fill our lives with such happiness, as well as messes and everything else but really they are so joyful here. Texas sure feels like home. It feels as though we have finally arrived home. We all feel more at peace. We have a joy thats unspeakable and we like it!

(This is AJ's new thing. When we ask her something and she says she doesnt know we get this face)
Be blessed Y'all!

Friday, August 26, 2011

Busy Life = not much blog updating!

Sorry. Things here are CRAZY right now. We are starting a new school year, I am teaching 4 this year. School is going well but this week its been here and there. We will get it though.

Noah is regressing in his therapy with ST. She works on the oral motor. Its been going on 4 weeks of no eating by mouth at all! Sigh. The therapist told me that insurance may begin to question the need for therapy if he is constantly regressing. Well, heres the thing..Noah hasnt been feeling well and when Noah doesnt feel well he refuses to eat. Thank God we have the gtube! I cant say that enough. I understand what she is saying though. She said we had to take him to the doctor. Ugh! That is a thorn in my flesh lately. We do not have a ped. They keep refusing us. I know the right doctor is out there and will continue to pray for God to lead us to them. I didnt want to take Noah to the ER because it was unnecessary and too many germs for a baby with a compromised immune system. So I decided to take him to a clinic that accepts walk ins. I like them in and out no questions.

The doctor was nice. She requested bloodwork to see how Noahs immune system is I guess before sending us to another specialist. We have to take him maybe next week for that. She said that his ear was a little pink but she didnt know if it was infected so to be sure he is on antibiotics and ear drops. I will do it this time but I know what cures an ear infection is a chiropractor and great adjustment not antibiotics. I dont want him over medicated. I am bummed he may have an ear infection even though he has tubes. All in all the visit was good. Noah is fine.

Paul and I were talking and we feel like the diagnosis of Trisomy 8 should be enough for therapists and insurance to understand that at times we will have setbacks!

Noah just got a new PT. We really like her! She did so much in that one session it was amazing. So much better than ECI. Dont get me wrong I liked the therapist but per ECI rules they were only allowed to come 2x a month and werent allowed to bring anything equipment wise in there. The new therapy comes 8x a month and brings stuff. I am one happy mama.

Noah is one happy baby too! He is really doing so well overall. He is learning many new things like how to spit at me when he doesnt want something. Ha! He is walking a lot more, still prefers crawling but he is standing and walking first until he falls then crawls after. Noah has learned to scream to get what he wants, well having 4 dramatic sisters I knew it was bound to happen. We are trying to teach him to use his words or signs. I really need to sign with him more. He can sign more but thats it. He can push his firetruck ride on toy backwards! He now laughs when things are funny like on TV or his sisters or his dad, he is a jokester and will crack himself and all of us up! Oh and he dances!!! I know some of this may not seem like much to some moms but to those of us who are special moms you get why I am so excited right?

Anyways..we hope to very soon go on a magical vacation! No not Disney Land but somewhere just as awesome! I can't wait to see how he does. I hope he is feeling much better by then. I will write more later. I will leave you with some cuteness :)

Also you can check out our other blogs for family fun and recipes that are OMG Delish!

Be blessed

Monday, August 22, 2011

Writers block

Yes I am still here. I just seem to have a bit of writers block.

How about a Noah update? I dunno if I mentioned this but Noah had a 2 pound weight gain in 2 weeks. This is awesome! He has never had a 2lb gain ever so this is just so wonderful. He has reverted back to not eating once again. We are on week 3 of refusing all things by mouth. Thank God for his gtube! He has started vomiting again. Surprisingly though I didnt freak out like I thought I would. I wasnt devastated or anything, Im just to busy to have any feelings on the subject. We think the vomit is due to the phlegm. Praying he is better soon.

We have had my grandmother staying with us for awhile so we have been sight seeing and what not. I tend to keep everyone in during the day because it is so hot out. Paul and I had planned a trip back to Pa but canceled it. We dont feel like spending all that money to go back to somewhere we lived all our lives.

Im gonna get real honest for a brief minute. We dont like Pennsylvania. Both of us have been over stressed for weeks dreading this long trip back. Paul developed a twitch in his eye and I overate and am honestly a bit depressed. I wish I could go into more detail but I cant right now. If you want to know more you can leave a comment with your email address and I can write you an email. So anyways we tried to figure out what to do. Paul decided that he would drive gram back in a tiny rented car. It would save money and save a 40 hr trip with 5 kiddos! Please pray for him as he makes the journey back and forth. After he gets home we will be taking a break. We decided not to answer the phone or talk to anyone for about a week. We need this. We need to live here in Texas as a family without well without Pa. Since we moved here we have had Pa people coming down or me going up. Its time to be here by ourselves for awhile. We are looking forward to a quiet and low key holiday season. We just need a break. Enough about that.

So we went to the botanical gardens and stockyards. I took the kids and gram on a field trip to the botanical gardens again(because I had a shoot I had to do) and then on to the Log cabin village. I like that place. The kids love that place. I cant wait to go there in the winter when it is cooler. It was very educational. I got 2 books for the kids to read, they are a bit too old for them now but they are about Texas history. The one was on a woman named Cynthia Ann Parker. When she was 9 she was taken by Comanche indians. She spent the next so many years with them, married the chief and had 3 kids. Her and her daughter were and returned to her family. She was never allowed to go back to see her Comanche family. Her daughter died of the flu or something and then Cynthia Ann starved herself to death. There is way more to that story but it was awesome! She never got to be truly free to decide for herself what she wanted. Can you imagine a woman now a days not being able to do what she want? Anyways we will be going back in the fall. Trin got sick while we were there I think the heat was to blame in part so we will not be going out until it gets under 110!

This past Sunday we went to ole South pancake house. Awesome! You must go if you are local. Try the german pancake. Oh Em Gee!We drive by the horses to see how they are. I cant wait to ride. Soon, I hope. Anyways we mostly stay in. So what else is new? Oh school...

The kids are in their 3rd week of school. Its going. This week wont be that great but we will get back in teh swing of it all soon. I plan to take a lot more field trips. I am thinking about the Alamo for a field trip. We are also planning to go to the Gulf of Mexico for Aj's 3rd bday. I cant wait. Something to look forward too. We will be going away soon too I hope. We are in the beginning stages of planning it right now so Ill tell more when I want to.

So thats about it. We are all here, all doing well. Hoping to settle down soon. I am looking forward to our first year here in Texas.

Be blessed

Sunday, August 14, 2011

Somewhere along the way I lost something.

From Pa to Texas something was lost. Perhaps it was my moral compass, is that the word for it? I got to Texas and was showered with praises. You deserve something nice,your kids deserve this, you deserve this, you need to do this and this. So..yeah...ok..my kids do deserve the best. I do give a lot is it too much like they say? Ok, Ill take that big tv, sure gimmee a new livingroom set, new washer and dryer..sure, car broke better get a car payment rather than a car we could pay for with cash.

We have a beautiful house full of beautiful things. Most of which still have a payment. That is something different for us. But we needed this stuff...seriously, we had no furniture...but did we have to get a livingroom set with a payment plan or could we just do as we always do and buy used? Oh conviction. Oh sweet conviction! I ask God what he would have me to after hearing my husband's heart about the "stuff" we have and how our giving have gone down since getting this "stuff". I heard immediately “Whoever wants to be my disciple must deny themselves and take up their cross daily and follow me." Ouch! Conviction! Lord, please dont make me give up my washer and dryer :)

Paul said that the biggest thing that has been bothering him is our livingroom TV. Really?! I dont even understand why he didnt tell me. I force myself to sit in front of it and watch it because it has a huge payment and costs so much. I am proud of him for telling me he wants it gone. This isnt us! We are going to sit down with the kids tonight and explain why this week we will be giving back our "stuff." We will look for stuff we can pay for with cash. I am calling compassion and getting our kids back! Compassion was nice enough to give us a chance to indulge in ourselves break while we got settled. Since we went on that break things have been not so good for us. Thats not why we give, I am just saying since going on "break" we have noticed things.

Look I am not saying this for pity or pats on the back, I dont deserve either. I am just laying it all out. This is real, this is me, this is raw. I have sinned. I have not denied myself but indulged it. I have forgotten I am made to live not of this world. Shame on me! God, forgive me. Forgive my weaknesses. Help me to live a life wholly and completely following hard after you. I forgot my purpose. A song comes to my Lord, a song I never equated to this subject until you brought it to me. "I know I'm not strong enough to be everything that I'm supposed to be I give up I'm not stong enough Hands of mercy won't you cover me Lord right now I'm asking you to be
Strong enough Strong enough For the both of us. Lord help me to deny myself. Help me to raise my family to believe in denying ourselves. I want them to know that we are not here for stuff but here to serve. God help us. Thank you for the break in the car, thank you for convicting both my husband and I and thank you for allowing Paul to express to me how he feels. Help me to take the criticisms that I know will come from this. Help to always remember my purpose here. In Jesus name I pray. Amen.

And he said to them all, If any man will come after me, let him deny himself, and take up his cross daily, and follow me.

For whosoever will save his life shall lose it: but whosoever will lose his life for my sake, the same shall save it. Luke 9 23 and 24

Can I tell you all what just happened? My husband went out to check on the car and there is no leak. Why was there a leak at church? I think it was a wake up call we desperately needed. Thank you Jesus!

Be blessed

Wednesday, August 10, 2011

Genetics Appointment

The last genetics appointment we had was in Pittsburgh. The dr told us he would be severely mentally handicap and soon. Fast forward to yesterday. I had waited a very long time to talk to the doctor who diagnosed Noah. I had been getting 2nd and 3rd hand info and although they meant well it was not the same as hearing it for myself from this doctor.

One question we had was what type of Trisomy 8 did Noah have? There is partial, mosaic or full. We knew it couldnt be full. She told me it was Partial. That there was no way to ell how well or not so well Noah would do. She did tell me that he looked great and was doing well and that the one doctor who said he could stop developing at any point she felt like he was wrong. Everything looked good. She will see us back in a year. What a huge sigh of relief. Noah is ok. Doing well and there really is no ticking time bomb. She did say he was very rare. Very very rare. That means no real good info out there to help us know what to expect.

Today Noah is once again sick which is what we deal the most with right now. He catches these stupid viruses and it just takes everything out of him. He vomited today too, gag. Rice makes him gag I found out and that and the cold and phlegm and one too many gags and BAM it was all over! Ugh! I should have been more sympathetic. I got him a bath and changed and lotion on and so far so good. He is sitting with his sisters watching Phineous n Ferb. Lol.

Be blessed

Wednesday, August 3, 2011

17 months old!

I can't believe my baby boy is 17 months old already!! Where did the time go? He still seems so very much like the baby of the house in some ways and in others he is mr. independent. When you have a child with special needs and or a terminal genetic condition I think you celebrate a whole lot more and cherish every milestone. Today we did just that. We celebrated the life that we have with Noah. Check out.

Be blessed

Monday, August 1, 2011

Noby update!

I just wanted to update everyone real quick. Noah has been growing like a weed. He went from the 5th % to the 11th% in just about a month. He is eating all the time now. He has mastered very pureed foods and now is eating chunkier foods. I am beyond thrilled. We have started to try drinking from a cup or bottle but no luck yet. He also has refused to walk or engage with his PT. Im not sure what thats about. Maybe it has something to do with the increased OT and ST focusing only on feeding.

I am concerned about Noahs speech. He doesnt consistently say anything. I will have to get up on all the therapists to make sure he does not fall through the cracks.

Anyways. A lot has been going on and I am super busy but will get back to blogging soon.

Be blessed