"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"

Thursday, September 29, 2011

Cuteness

Noah is just too cute. He walked into my bedroom grabbed my pillow and laid down on the floor and fell asleep.



Yesterday he was in a mood all day. Not a bad one really. He is hysterical with the faces he makes. His PT held up two balls and ask him to pick one. He looked at her with this ornery grin on his face and said "No." HAHAHAHA He shook his head and said No. She didnt know what to do. He worked with her for a few minutes but almost the whole time he would just sit there content to do nothing saying No. LOL. Hes too cute!

Be blessed

Monday, September 26, 2011

Noah Noah Noah

What is going on with Noah?

He is now walking 95% of the time. Yay!!!
He loves to give kisses and hugs. (Especially if it gets him out of therapy)
He is very very smart. When I say one he says two. Guess he hears me counting to 3 with his ornery sisters haha.

Last week he had a scope. The results came back normal. Then the biopsies came back normal. Everything she checked for came back as he didnt have it. That is good, but at the same time it leaves us with a blank look on our face and us scratching our heads. Why will Noah not eat?

Next Wednesday he has a swallow study. We are hoping that will show something. Everything in me knows this isnt a behavior thing. He acts like it is really painful. He braces himself when you touch his face or sternum. His ST noticed this as well. She will be at the study with us which is good. In the meantime the doctors have now agreed he does need to be on a certain drug. At first they all said no because it would be cruel to induce hunger if he cant physically eat but they say since nothing shows anything they are willing to try it. It is an antihistamine. The side effect other than drowsiness is it induces hunger. The dr will start it out very slow. So we will see how it works. I think that this could possibly be due to horrible allergies. I dont know though. Paul will be picking up the RX tonight so we will just have to see.

On a side note I found out today that I am one of 30 finalists for a Women Move the World contest. I have to fill out some papers and then I will receive a flip video camera and then if I win the contest (no chance) I would get 5 days and 4 nights in LA. The winner gets a behind the scenes on a commercial and possible doing and ad or commercial for Caltrate. Its all just weird. Lol. Im honored but dumbfounded how it all happened. I hope that this can bring awareness to Special needs, kids with Trisomys and adoption.

Ok so soon I will be posting pictures of Noah up here. I have been lazy and only taking them with my phone but have no idea how to post them on here. I will make an effort to get my camera out and capture some cuteness. :)

Be blessed

Tuesday, September 20, 2011

No news

We got up at 6am and got everyone ready, packed our bags, lunches made, car checked, kids in car seats and out the door. We headed 90 mins away. Surprisingly enough I didnt get lost. However I did have a stomach ache the whole way there.

AJ didnt have to pee until 5 minutes before we arrived. I held her off until we pulled in the parking lot but by then she was making some faces and pleading with me. lol. I grabbed the on the go potty stuck it on the ground, no time for the bags and let her go. Then I threw water on it and the potty and we were ready to head in.

It was a nice facility. They gave us a portable dvd player and let the girls pick out a movie. They picked Toy Story 2. So we headed into our first room. It was huge and very private. It was the only room that had a door rather than curtain. We stayed in there awhile. Some nurses and drs came and went then it was time to move to the other room.

We werent in there even a minute before the nurse came in and said its time. I carried Noah into a room down the hall. I ask to change his diaper so he wouldnt be wet and uncomfortable. I cleaned his face and walked over to the room changed his diaper and they out the mask on. The room was all orange, orange lights, hanging basketballs from the ceiling. He fought the gas mask for a couple seconds, I think it was the smell. I sang to him and made sure he could see him. I touched his hands. I sang his song. You know the toby mac n Jaime Grace song I love the way You hold me. Well we changed the words to say I love my little Noby. I think it fits. I feel this crazy world is gonna bring me down That’s when Your smile comes around Ooh, I love my little Nobys By my side You’ll always be You take each and every day Make it special in some way I love my little Nobys In my arms youll always be You take each and every day Make it special in some way I love You more than the words in my brain can express I can’t imagine even loving You less Oh, I love my little Noby. See how it fits.

Anyways he was out and I walked out, crying. It doesnt ever get any easier. We have done this way too many times to count. It was over in a matter of minutes I think. The doctor came in and told me everything looked good. Thats good I guess but doesnt solve our problems. She said biopsies will be back in 3 days and they may tell us. I hate that he went through this and we have no answers. I dont want anything bad to be shown but I want answers. The doctor said that she was going to be very methodical and get to the bottom of this. I know she will.

Noah woke up like he was late for a very important meeting. He got up threw the covers off, stood up, fell down slapped people away, got back up, fell back down, refused to let me get him hooked up to take some liquid. It was funny. We got out of the hospital pretty quick.

I only got lost 2x on the way back home. We made good time. When we got home I got Noah fed and meds given. Then the therapist called. As I was talking to her Noah was playing and he pushed over the vacuum. It fell and lid up his belly. I knew...instantly I knew. I ran over while on the phone still lifted up his shirt and saw the gtube and groovy tubie laying on the floor, balloon inflated and all. I then looked over and milk is spraying out of the huge hole in my babys belly. I screamed into the phone"S***!!!!!" I am not proud, it is what it is, it just came out. I hung up the phone dialed Paul and put him on speaker.

From there while holding my hand over his belly I screamed for Trin to get the syringe upstairs that I needed to deflate and inflate the balloon. I called for Cherry to get an empty cup and cup of water. I deflated the balloon got the lube(screaming wheres the KY JELLY WHERE IS IT??? Sorry neighbors) put it on there and then tried to put the tube back in but it didnt fit. I screamed for Trin to grab the new button. She brought it and after applying pressure I got it in there. It took about 15 mins to stop shaking. I ask Noah how many gray hairs and wrinkles he gave mommy and how he owed me a kiss and he crawled over and kissed me and then I said I needed one more and he did, lol.

Now lets get to some cuteness to make us all smile :)






Be blessed

Monday, September 19, 2011

Frustrated

I am not frustrated at anyone but myself. Noah has some awesome doctors, but all roads still lead to possible surgery and the surgery is one that he should have had at 6m old with the gtube placement but they said was unnecessary.

After talking to Dr Whitney, Noah's amazing GI, I feel better. We talked about the drug Pulm suggested that would induce hunger and she said the same as Dr. Sparry his awesome ST at the hosp. They both agreed (which is probably why I didnt get a Rx for it from Pulm) that it would be hurtful and mean to give Noah a drug to induce hunger and him not be able to eat.

I poured out my heart and honest feelings to Dr. Whitney. I told her I caused this. If its reflux and he wasnt on reflux meds because we had determined it wasnt reflux in Pgh and the meds were harming him, then it was all my fault! She said, "Its not your fault. Believe me, I would be honest and tell you if you caused this. GI is constantly changing and I dont believe for one second that Noah has had this exact problem before." I let out a huge sigh of relief. But part of me is still uneasy. I dont want to let anyone down, especially Noah. I dont like the idea of more surgeries, more meds, more side effects. Its all a lot to process. I had the child who was doing fantastic. Now regressing.

The regression is probably the hardest thing for me to deal with. When Noah was not eating and not walking and not meeting milestones and vomiting all day everyday it was what it was. I was okay with that I guess because it wasnt any different. When he met a new milestone we celebrated even more. It would all work out. But having him almost ready to get rid of the gtube to go completely back by like a year, that...that was hard. Dont get me wrong and think I am complaining. I am not. I have my child here with me and I dont care about the rest as long as he is here with me. I am just saying that is honestly a hard pill to swallow.

I do want to share that the therapist say that Noah's mind is all there(doesnt matter to us but good to know). They are amazed all that he understands. This makes me smile big! People always assume that kids with trisomys are dumb or can't understand anything. Noah is here to prove that stereotype wrong. When he is doing something he knows he isnt suppose to he gives us a look and does it anyway. He understands which remote plays his favorite song. He knows how to turn things on and off. He understands when we tell him no and when we talk to him. He is super smart :) Can you tell we are a little proud of our boy.

Anyways I have a lot to get done before tomorrow. But will update as soon as I know something. Please pray that they figure out what is causing this.

Be blessed

Sunday, September 18, 2011

So much going on.

I have sat down to write several times and always an interruption. Let's see what to say?

Noah hasnt eaten by mouth in 2 months.

He has lost a pound.

The drs are concerned, therapists are concerned.

I took him to his GI and we love her. She is on top of things. The dr says he needs another scope. He will be scoped Tuesday.

New Pulm dr has him on inhaler and breathing treatments. The thinking is less secretions(possibly allergy related) the better his chance of accepting food.

So we need a swallow study as well. Nothing really is gonna happen until after tuesday. This is just a starting point.

I have a lot going on so I need to go. Will update again soon.

Be blessed

Wednesday, September 14, 2011

Sister's in the Hospital

To check out how the fam is doing right now head over to http://blog.beckfamily143.com/

Cherry is in the hospital.

be blessed

Tuesday, September 13, 2011

Ugliness of Adoption

I have found that judgement seems to be so easy for anyone you hasnt adopted or isnt in the adoption scene. Why? I read a hateful blog where the people who started the blog would go into adoption forums and steal what others said post them on the blog then totally tear those people apart. They are very anti adoption and it is apparent. They dont understand RAD, they dont understand dying rooms or mental institutions, they cant see past their own hatred for all things adoption related. They criticize the way we speak, the actions we do, the discipline ideas we have and call us ungrateful and kidnappers. If they could only see the babies starving to death in Russia, China, Bulgaria, etc. If they only understood foster care and all the kids there. Its sad and they are pathetic for what they say and how they treat people.

But it isnt just these anti adoption people its APs and people in the adoption circles that think they know what is best for everyones family and so people who have to disrupt their adoption are criticized and ostracized and made to feel awful about what they have done although they are probably worse on themselves. When we(APs) say what kind of methods we use for discipline then someone tells us how cruel we are and how we dont appreciate the gift given and maybe we (APs) shouldnt have done this to begin with. Or when we talk about how tired we are and how sick of hospital stays we are or anything medical related we hear it then too. "Well you ask for this life!" Yes we did but that doesnt make it easy. Does that mean because we ask for it we are not allowed to have support?

So what do we do? We keep our mouths shut and suffer in silence. We dare not say a word and when we speak about adoption we only speak about saving a life, how happy we are they are home, how wonderful our life is and how everything is peaches and cream. Then more orphans will be saved, right? Or is it more orphans will be displaced because someone thought it was all roses and went and adopted a SN child they werent ready for and 6 months later they are shipping them back or advertising on craigslist "child free to good home".

We need to talk about all aspects of adoption. Adoption is rooted in loss and we need to remember that. We need to not make promises to birthmoms we cant or wont or dont have any intention on keeping just so we can get our hands on their babies. We need to open up the secret world of baby brokering and bribes and scandal in other countries ,as well as our own, so that we can expose them and fix them. We need to tattle on the adoption agencies scamming people and hurting kids. We need support and we need to support others. We need to give grace. We need to remember what it was like when we went through it. We need to be allowed to speak freely about the ups and downs of adoptions so that in the end the child will be saved. In the Bible it says "And now these three remain: faith, hope and love. But the greatest of these is love." We need to love one another because we all have faults, "for all have sinned and fall short of the glory of God"(romans 3:23). We need to pray for one another and lift each other up.

Be blessed

Sunday, September 11, 2011

9-11

I could tell yall what I was doing 10 years ago today. I could tell you how I felt that day and the weeks and months to follow. I could tell you how how this impacted my life. I probably did all that last September 11th. What I want to do today is talk about today and our future.

You know the Bible says we are not guaranteed tomorrow.

James 4:14
New International Version (NIV)
14 Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes.

Proverbs 27

1 Do not boast about tomorrow,
for you do not know what a day may bring.

Because we are not guaranteed tomorrow we should make sure to live each day with purpose. Today, on the 10 year anniversary of the most horrible American tragedy in my lifetime so far, I think it would be a good day to understand that we really don't know what tomorrow will bring. So we should answer God's call today.

I am not going to tell you that God doesnt call everyone to adopt, because I would be lying. I believe there is no calling but rather us choosing to obey or not obey. Does this mean that you who have not adopted have not obeyed....short answer yes. The Bible is clear. James 1:27 is just one verse related to orphans. Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.

I am going to tell you as much as I know about a little girl who is called Lyla. This is what is wriiten by RR :

Girl, born November 2009
Lilianna survived!! She had an adoptive family previously, but they were not permitted to adopt her at the time because she was in the hospital and not expected to live. But she DID! We are thrilled she is healthy enough to be relisted!

Sweet little Lilianna has a congenital heart defect (ASD and VSD) and possible pulmonary issues. She is also missing her left forearm entirely. Lilianna has bright blue eyes and needs a family right away. We have many pictures of her!

This is what is written by the family that wanted to adopt her:

On May 17, 2010 I found the most Beautiful Little Girl on Reece's Rainbow and I knew with all of my heart and soul I was her MOM!!! I would do whatever it would take to bring this precious princess home!! On June 8, 2010 our family committed to this little girl with Down syndrome listed as Lilianna.We decided we wanted to name this sweet little girl LYLA and our blog would be titled
"Lucky to Love Lyla"!!
As a family we were so excited to bring this little girl home! We had so many plans for her and for us as a soon to be complete family. We had thought she would probably be home in November and since her birthday was in November it all made perfect sense.

On September 9, 2010 we received an e/m from Andrea at Reece's Rainbow that Lyla was very ill. She was in the hospital and they were not sure if she would SURVIVE. Our World Crumbled!!!!! On September 29, 2010 we found out that we would NOT be able to bring her home. She was too sick and it was thought that her next home would be HEAVEN. Our hearts were in a million pieces and I just wanted to get on a plane and be there for her, by her side, loving her until she went to HEAVEN!!!! I remember feeling responsible that I had PRAYED so many times for her to come HOME but that GOD must of misunderstood what "home" I meant - I did NOT mean with HIM - I meant With US!!!! So we had to decide what we would do. It was our plan to adopt another little girl with Down syndrome and return in the Spring if Lyla survived to bring her finally home!! There was no way I could choose another child. No way. I had stayed up all night just starring at all the beautiful children needing a family and it was impossible. So when Dave woke up that morning, I told him he had to do it!!! And he sure did!!!! We were so BLESSED to adopt Isabelle December 30, 2010 and bring her home January 2011. There is no question about it that LYLA SAVED BELLE &
Lyla also SAVED me. In December A family that was adopting from the same orphanage as Lyla had asked the caregivers about her while they were there. They were told that she was critical and she would be going to HEAVEN very soon. I had PRAYED that JESUS would just take her HOME as she has obviously suffered enough. This poor sweet little girl, she had turned 1 and was as tiny as a newborn. I believed it was time for the suffering to STOP!!!!

We were a very happy family of 8 - we were all head over heals in LOVE with Belle!!! And we couldn't imagine life with out her. But it never was far from our HEARTS knowing that if it wasn't for Lyla - Belle wouldn't be here. Lyla was always on my mind and in my HEART.

So Spring came and I contacted Reece's Rainbow but they had not had an update on Lyla! So we waited and then May came around again and I had the crazy obsession that we needed to adopt again, another little girl with Down syndrome from Ukraine. So we asked about Lyla and still no update.

I grieved the loss of Lyla as I was sure she was in HEAVEN. I mean how could she of survived??? It was almost unbearable to let her go!!! But I did!

In June I was scrolling Reece's Rainbow and I found a little girl listed as Macie. We committed to her on June 8, 2011. (The same day last year we committed to Lyla). Macie was adopted by a family outside of Reece's Rainbow so we needed to make a choice. Maybe if we had waited.........Well, I could maybe all day and night. Anyways, we decided to continue with an adoption of a little girl with Down syndrome. But I couldn't choose - No Way!!!! So I again, left it up to Dave. He chose a BOY!!!! Oh my, I didn't see that coming. A beautiful little boy who coincidentally was in the same orphanage that Lyla had lived. I did not tell Dave that it was the same orphanage, he had no idea. We committed to Gavin on June 25, 2011 and we were all so excited to bring home a little boy!

July 28, 2011 I received word from Andrea (RR) of an absolute MIRACLE!!!! Lyla was ALIVE and able to be ADOPTED!!!! The beautiful little girl that I LOVED with all my heart and SOUL and GRIEVED the Loss of was ALIVE!!!! Oh MY!!!! I couldn't Believe it!!! How in the world did she SURVIVE. She is obviously a FIGHTER and SHE OBVIOUSLY Didn't GIVE UP. Sadly, I had given up on her!!! How could I??? I had promised that I would do whatever it would take to bring her home!!! I promised to FIGHT for her!!! I know it probably seems obvious that we should just adopt Lyla while adopting Gavin. Especially since they are in the same orphanage!! But it is NOT that easy. We can NOT adopt another child. We just Can NOT!!! So do we turn our back on Gavin??? That doesn't make any sense either. We are all heartbroken and so TORN!!! We are over the moon GRATEFUL that she is ALIVE. As this is the most important part of all of this!!! It's not about us - I know!! It is about HER!!! But I am sick with GUILT - How do I turn my back on the ONE person that SAVED ME and more importantly SAVED my Beautiful Daughter Belle????? Oh Friends - We need Help with this one for sure!!!!So what will we do?????
Well, We will FIND her a FAMILY!!! We will advocate for her like crazy!!! I will BEG all of you to please do the same!!! PLEASE??? Blog about her, Facebook about her, Twitter about her, tell everyone you know about the little Miracle Girl who is simply meant to do BEAUTIFUL things in this world. She has done so much already - and she has done these things living in an orphanage and ICU!!! Imagine what she will do when she is in the home of a LOVING FAMILY?????? Oh My!!!! Just HUGE!!!!
Oh Please, Please, Please GOD
Find Her a Forever Family


This family loves Lyla. They also know that she was put on their hearts and in their minds to save another child, their Bellie. I feel for them. I understand a bit of what they are going through seeing as 2 children saved Noah.

So I am asking you to search your hearts. I am asking you to pray. Ask God what He would have you do with the life He has given you. We are all here for a reason, for a purpose greater than this world. Dont talk to me about excuses ok, Im not listening. Money? Itll get paid. I just dont want to hear you arent called. Adopting a child isnt a call its a command. You either chose to obey or you dont. If you feel like the Lord is leading you or even if you dont try at least try. You will never know the miracles God can do until you welcome His little children in His name.


Lord, please find Lyla a home and a family that she so richly deserves. Please find Faith and Diana homes as well. I want every child to have a home, every orphan to be cared for and every person out there to shut up about how they cant do it. But Lord not my will but Yours be done. Set people on fire for adoption, for special needs, for children Lord. Lord bring our next child to us God, let us know exactly who we are to adopt, exactly who our next son is. Thank you for loving me in spite of my faults, thank you for loving these children more than any of us every could. Heal them and please God dont let them die alone. In Jesus name. Amen


If you want to chat with me about Lyla or other kids needing homes, how to adopt or anything really feel free to leave a comment or email me at ashleelinnea at gmail dot com. Please pray Lyla will find her forever family.

Be blessed

Monday, September 5, 2011

The horrible, no good, very bad day!

Or should I say weekend. Sigh.

Saturday morning at 3am my husband left for Pa. He was taking my gram back to her home, driving 21 hours! After they left I couldnt really sleep so I was hoping the kids would sleep in, they didnt. As early as 8am they were up fighting screaming crying and just being generally unpleasant. So yup thats how it started. The day is really a blur now, I think I blocked it out. I remember cleaning up p**p off of the floor in the bathroom though. We stayed in the house, doors shut and locks blinds drawn all day.

I could barely walk I was in so much pain from lifting too much weight. Then on top of that I had horrible kidney pain. I was a hot mess. I couldnt bend my legs or get comfortable for anything. I ask for prayer and took some pain pills and God got me through the rest of the day.

Later that night we had a sleepover. We started off the night by making t shirts. That was actually fun! After that we headed out back for a few quick pics. Then we made popcorn and watched a movie. It wasnt all bad.

Sunday I had to get everyone up early for church, but they all slept in. They cant seem to do that during a weekday or a Saturday, haha. AJ had peed on the floor then slipped in it but I didnt know that because I was in the bathroom trying to get ready. Then I walk out into the hall and tramp in the same pee. Ugh! I get everyone dressed, fed and ready to head out the door and just as we were leaving Noah puked everywhere. Grrr. So I got him cleaned up and changed and off we headed.

Church was great. Not only was it a great message and great worship but also a reprieve from the kids. Just me and a bunch of adults. That was nice. After church I felt so good I took the kids to Mexican Inn. We got a table and it all seemed to be going well. Noah had 2 crayons and while I was taking a picture he put the crayons and his whole fist in the salsa. Fun! After dinner AJ threw a huge fit and screamed while we were leaving the place.

We got home and I had them lay down to watch a movie so I could get some stuff done. I had to feed Noah. Then I left him sit for awhile so it settled in his stomach. I ran tot he bathroom as I had been holding it awhile and as soon as I hit I heard something.....then screams "MOM!! MOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOMMM!" Then AJ came running in, "Mom, Noah spit."

Ok I thought I can handle this. I did this morning. So I got up and went to see and low and behold...vomit covered the majority of the livingroom. How on earth?! It was on the top of his head clear to his toes. All over the seat, all over the floor, just all over. It had to be his whole 8oz feed easy, but man did it look like 16 oz or more! I got so mad, my flesh is weak. I had to remember, look it isnt him doing this to be mean to you. He cant help it. So I got him undressed and ran the chair outside and it leaked vomit the whole way to the door. Gag. Then I got him in the tub for a quick bath. Then I had to try to mop up the carpet with paper towels because we have no rug scrubber. That didnt work too well. By the time everything was cleaned up it was bed time and I had had enough.

Monday was pretty much of the same, more vomit, more problems, more crap. I called the GI doctor, but they werent in because it was a holiday. Fun! So the on call doctor called me back and let me just tell you..he was an a**. Excuse my language. He told me what my problem was, no good Ped that knew everything about Trisomy 8. (Sorry dork but there is none) Then I told him we were trying to find a good ped but couldnt due to having medicaid as a secondary and we dont vax. Thats all it took. He then decided he wasnt going to help but belittle me and my convictions. He told me that when the great measles outbreak occurs in the very near future my son would be dead thanks to my uneducated convictions. (Like the great swine flu outbreak?) I told him that wasnt the issue, the issue was vomit, now help. He rambled on for another 5 mins or so and then I said my peace. I ask again, what can we do to help this right now. Then I proceeded to interrupt him every time he mentioned vaccines. Finally he said the secretions were causing the vomit bc of his hyper active gag. Ok, great, thank you, now who do I see about secretions...vax, vax, vax, dude shut up about the vaccines and name a dr. vax vax vax, ENOUGH! Dr name right now anus! ENT. Thank you Goodbye!

What a dork. I mean I was seriously ticked off after that call. had I been a man I doubt he would have spoke to me like that. We had the feeding pump break and a horrible dme to deal with right after and I was spent! Paul walked through the door and I collapsed in his arms. All was better. I rested there for a minute and got calm. The DME finally showed up and we got Noah eating.


So all in all the weekend was horrible! I am grateful it is over. Looking forward to not reliving that.


Just writing it all down made me exhausted, Ill post pictures another time but dont worry I will leave the vomit ones out :)
Be blessed

Saturday, September 3, 2011

18 months ago today

My son was born 18 months ago today and I didnt even know it. How many moms can say that haha. You know the women that say they never knew they were pregnant? I think I got them beat.

Noah is just thriving. He is amazing. Talking more, laughing more, walking more making funny faces. Just a typical awesome little guy. He really does just light up our lives.

Oh Noah does the cutest thing! He loves the song by Will I am called What I am, sesame st version. Now Noah has leaned to drum during the drumming parts. It is too stinkin cute. Paul got a video of it not sure if I did or not but when I do I will post.

There is little that Noah isnt doing, but one major thing is he still wont eat. Please continue to pray that he does.

So anyways to celebrate 18 months we got all dressed up to play. Take a look...







Be blessed