What children know and say… Funny Story

Posted on Friday 30 March 2007

Aww, look at my two men!

Have you seen the cartoon commercial about Meet the Robinson’s? You’ll get this at the end. 

Apparently in Hannah’s kindergarten class, there has been conversations between the kids about Knoah. It has been asked said several times that some of the kids have told Hannah that her “baby brother has a really big head”. Hannah must have reached her breaking point.

She told me she told them…”Duh, yes, he does have a big head, he’s a dwarf and that is just the way he is”.

When I asked her what do they say, she said they ask what that means and she tells them “He is going to be short because that’s the way my mom made him!”

I am trying to figure out how to post vids here, but time is precious! Anyone wanna give me tips?

*Edited to say: It is okay to laugh, it’s funny!”*

Tonya Sweat @ 9:13 am
Filed under: Daily
This is NOT my cross to bear!

Posted on Saturday 24 March 2007

Knoah has just been released from his 3rd hospitalization. He had another episode Thursday morning while we were in the car. The only reason I knew what was going on was because we were waiting for Hannah to get out of school and I was parked.

His breathing got really funny sounding, almost like it was forced and slowed. I got into the backseat to look at him and his chest was moving and his face was extremely pale. He was sweating and tense, but limp. I continue to stimulate him unitl his breathing returned to normal….huh, and he pinked back up. I made ten zillion phone calls to the doctors and was told to just take him to the Children’s Hospital. I think I made it there in 15 mins. It should have taken 25-30 mins. He was exhausted after it and fell asleep.

I don’t know what’s wrong with him. I want to know why he does this. It is out of the blue he has these epsiodes. No warning, nothing. The neurologist wants me to video tape these epsiodes. I told him my first reaction isn’t going to be “Oh Knoah’s turning blue again, let me grab the video camera and watch through a lens!”  I have to go out and buy a digital video camera. We have one that is 9 years old, but it only takes those small tapes. With a digital one, it will be small enough to carry around with me at all times and I can download the video to the computer and email it to them. If I can remain concious enough to even do it.

I swear I am going to have a heart attack. I am always going over CPR in my head, looking over at Knoah’s chest to make sure he’s breathing, watching his coloring. I want it to stop. I pray to God everynight to make them stop. I beg God to please just help him. To help me. The saying is that everyone has their cross to bear. This is NOT my cross to bear. This is not something I have to do. I chose to do it the day I agreed to be a mother. I want to do it. I will do it. Although, in all honesty, I do so with tears in my eyes.

I know I will be stronger, I know I will be a better mother, a better person, I will b

I am stronger, I am a better mother, a better person, I am becoming the person God wants me to be.

But this doesn’t mean I don’t want to hid in a corner and cry my eyes out. Apart of me is, but I think we all hid from something, but we manage to get it done.

Tonya Sweat @ 7:50 pm
Filed under: Daily and Doctor's and Health and Uncategorized
You don’t EAT the patches!

Posted on Tuesday 20 March 2007

 

Knoah’s apnea monitor is on him 24 hours a day, with him becoming more active. The little snot has realized the leads are attached to his chest and he had taken active pursuit on pulling on them, daily!

 I can be home, Knoah happily swinging in his swing and “SCCCRRREEECCCHHHHH!” I look at him, making sure he is okay. Yep, he’s fine, look at the monitor, it reads loose lead. Okay, I turn the monitor off, pick up Knoah and start search for the lead the has strayed. I can’t find it. I start to undress him, only to find the leads have have managed to stick themselves to Knoah’s sleeper! The problem with this is, once the wiggle around Knoah’s chest, belly and back. They become ineffective. I grab new onces, talking to Knoah about he has to not grab at them because he needs them to stay where I put them. He doesn’t care, he laughs. Talking in his speak.

I don’t understand him, but I am sure the conversation goes something like this.

“Hi mommy, I love you. Hey mommy, I know how to make you run, HAHA. MOMMY, look I am pulling on them again, I didn’t mean to, my fingers are still new and there amazing!! They wrap themselves around things, hey look it happened again, HAHA. I wonder what they taste like, let me sample one, SSSCCCRREEEEEECCCCHHHH! Oh, that’s scary, WWWAAAA!.”

He’s funny! He is sleeping through the night now. I don’t wake up to the sunshining through the bedroom window, he wants to talk to me. Loudly! AAHHH. AAAGGOO. Aggghhh. GooooGGOOO.

Knoah reminds me alot like Jacob and Hannah. He has Jacob’s calmness, Hannah’s drama sense. It’s actually a nice balance for him.

He has discovered his finger and they must taste like cocoa. He shoves them in his mouth to the point of gagging himself. Then he looks surprised that he’s coughing.

He has come so far! The are certain things in life that honestly changes you, make you really think about things. Makes you relish the air, the warmth of the sun. Your able to look outside yourself and see the world in a different fashion.

The name K-N-O-A-H, is a form of the hebrew

name N-O-A-H. It means Rest, Comfort.

For the first time in my life, I have it and I am okay!

   
   
 

 

Tonya Sweat @ 5:27 am
Filed under: Apnea and Daily and Milestones
He’s just not happy!

Posted on Tuesday 13 March 2007

 I finally got Knoah to sleep. With today being just beautiful outside, we spent a lot of time out doors. We walked to get the kids from school, we went for a walk later in the afternoon. I thought the fresh air would be good for him. It was the first time I have been able to bring him out and not have his face covered. Boy, was mommy wrong! He has been fussy! I held him, kissed him, tried to get him to burp. Nothing worked. Now he is sleeping peacefully.

I still have him sleeping in the bassinet next to our bed. I am just worried if he has an alarm I won’t hear it. I was thinking the other day about the report Dr. Pauli did about achondroplasia and seizures. Knoah hasn’t had an apnea alarm at night. All of his alarms have been during the day. This fits with the thought of seizure precipitated apnea. He doesn’t appear to be having seizures at night, it is while he is awake.  I am going to talk to our pediatrician about starting seizure meds. I don’t want to go that route if it’s not warranted, but I don’t know what else to think.

I am also going to look into getting him an Oximeter. It is a device you place on the finger to measure the bloods oxygen saturation level. It also appears the when he starts to have a seizure his oxygen level goes down and he becomes cyanotic.

In all thought he is doing well. He is laughing more and is just wiggly. He is always kicking his legs and moving around. He does enjoy watching what you do. He also enjoys his fingers, I think they must taste like chocolate. I have tasted them and they taste more like saltines, LOL. I guess I should get some sleep before he decides, we don’t need sleep!

Tonya Sweat @ 7:19 pm
Filed under: Apnea and Daily and Health
Head, Shoulders, Knees and Toes!

Posted on Thursday 8 March 2007

This is an 18th birthday party picture!! Go Mom!!

The report form Dr. Pauli is very reassuring! The only major concerns are Knoah’s apnea and his back. All other physical aspect of Knoah’s growth is good. Based of the growth charts for Achondroplasia, Knoah is typical or average. He is in about the 50 -60%. On the average growth chart for children this is how Knoah fairs:

AH- 10% for weight, below 3% for height

If he were AH, at the 50% he should be about 16 pounds and about 26 inches long.

Achondroplastic chart- 60% for weight, 50% for height

He is 12.5 pounds and is 21.75 inches long.

As far as his apnea, Dr. Pauli feels that it is seizure precipitated apnea. Problem is, we have to catch the seizures on an EEG to get it diagnosed. So when Knoah had his episodes last week it was only a few hours so no luck getting him hooked up. If he does it again, in a few weeks I will be ready to push for the EEG. My concern is that if his seizures are causing the apnea and he has a severe seizure (like the ALTE) we need to be in the hospital. (IMO)

It is a four page report that describe Knoah from the top of his head to his toenails! Really, Dr. Pauli looked at his toenails!! They are kinda funny looking. I’ll post a pic later, but they are dorsiflexed.

Besides the major issues, Knoah is quite typical! It makes me feel better knowing this. I know that most families haven’t been through what we have, but there are others who have gone through more! Oh, this is really cool. I received an email today from a man named Josh and his daughter also achondroplastic. He thanked me for blogging and sent a picture of his beautiful daughter. He lives in California! Someone in California is reading my blog. How cool is that!

So with Knoah approaching his 4th month of life, he is doing well. You know what I mean. He looks like he is about 2 months old, he is gaining his head control pretty well. I am proud of him. I bought him a tummy time mat that has a pillow to help keep his face from being flat into the floor. He seems to like it. We heard him laugh the other day, it is a deep belly grunt-like. It is hysterical.

Everyday I get with him, I thank God. It is funny, I have always been a believer. I don’t attend church like I should, but I believe God and his wisdom lives in the heart and soul. Church is a building where a bunch of people gather who feel like you do. I am working up to going. I talk with Jesus every night and thank him for giving me another day with my family. For giving me Knoah. That little boy did something to me during his first minute of life. I was helpless to give him breath. Sure the doctors were there, but they didn’t make him breath, God did. And I owe him my life for that. At that moment, I experience the true sacrifice God made for us, giving his only son for us. He knew his son would die for our sins. He willingly let us take his son’s life. I was willing to give my life for my son. I could not at that moment say “Yes, you can have him”. I was selfish, I am selfish, I want Knoah with me. I am not worthy of God’s love, but he does love me. I know this. 

Wow, okay, that was a bit deeper than even I thought it would be. So, here I am. Knoah is peacefully asleep, quietly, no. He’s a loud sleeper, but that’s okay! It is his breath I live for. It is Jacob’s breath I live for. It is Hannah’s breath I live for. It is my breath that keeps me living.

I thank Will a lot for giving me the children. He would give me more if I let him! ; ) LOL

Talking about Will, he had a very nice review in 03/08/07 editorial section. It was about the Underground Railroad Tour. I am proud of him. He loves what he does. He like providing opportunities for the kids to get to know where they came from and give them guidance on where they are going. Love you honey!! 

 

 

Tonya Sweat @ 8:05 pm
Filed under: Daily and Doctor's and Health and Milestones
Four basic values and life. Your opinion?

Posted on Tuesday 6 March 2007

I was sitting around thinking today, like I don’t do enough of it already. I know we will face issues with society in general when it comes to people. There will be those who will be understanding of Knoah’s dwarfism and treat him as a person, looking past his short stature. There will be those who will continually question his intelligence, abilities and standing in society because he is different. Some people will trust him when he says something, others will no doubt want to treat him as if he is unimportant. I expect kids to be mean. They just are. They don’t realize how they can impact other people. It maybe funny to them, it maybe their feelings are hurt, so they want payback.

I wondered how do we counter this from happening? How do we raise him so there is no questioning his thoughts, abilities and motives. Then it dawns on me, wait a second! I am average height, intelligent, articulate, compassionate and honest. Still there are people who look at me or my husband as if we are insignificant. We get treated like we simply don’t exist. More so my husband than I. For me, it bothers me, but ultimately, I DGaF. I really don’t care if someone doesn’t like me. I was raised appropriately, I treat those the way I want to be treated. Openly, honestly and with compassion.

My observation of my husband’s standing in life is this, he is either appreciated or not. I watch him in his daily interactions with people, I listen to other’s impressions of the way he gets treated and I am worried. I mean, we as a family, people try to associate ourselves with people who are genuine. As we talked about this, I learned a few things. He looks for individuals who follow four basic values: to help, respect, trust in and take responsibility for self and others.

I was breaking each one of these down today and came up with a few pros and cons with regards to our situation.

To help: Be of service to anyone you come across. In work, in life, in the community. You must without question always be prepared to help others and do so with a honest heart.

Respect: Always show respect. Regardless of who, what, when, where and why. When you are disrespected, it does not mean you may do so back. Respect is not demanded it is deserved.

Trust In: You have to trust in those you encounter until they prove they are not to be trusted. When you can be trusted, you keep their trust. When it is lost, you can never fully replace it.

Take responsibility in yourself and others: You have to take responsibility for your actions. Right, wrong or indifferent. Show those who do not know or do not want to take responsibility how to. You have to be a model for others. It is their choice if they follow it.

Now reflecting on this, it brings up a few questions and responses.

To help: Let’s say you help. You do so willingly and wantingly. Then it is thrown away by someone who doesn’t believe in this. We have all come across that person, the one who says, I am here to help, but doesn’t really mean it. They’ll help when it benefits them. How do you not let this affect you day in and day out?

Respect: You show respect for another person because they are a human being. You don’t have to like them, but you can show them respect by acknowledging their existence. Then how do you respond when you are ignored, put down publicly and talked badly about. We won’t get into law of slander, but just simply disrespected. How are you suppose to react?

Trust In: One has to trust in something. You car starting everyday, you kid’s behaving appropriately in school, your spouse loving you. You have to trust in something or someone. Then you learn the hard way, you can’t trust those your suppose to trust in. At work, you have to trust your supervisor sees your dedication and extra work. Then you find out they don’t. Your supervisor talking about you behind your back and your still expected to trust them? How?

Take responsibility of yourself and others: Most people are taught early in life that for every choice you make, you must take responsibility for it. That you must show others how to take responsibility for their actions if they don’t. Be a model. Then when you do take responsibility, you still encounter those who want to make excuses for the reason they won’t take responsibility for their actions. They don’t care who they hurt or what they have done. Hurtful words, spiteful actions are a way of life for them. Yet, we are still expected to interact with them.

I said earlier I was worried. Why? What I am describing are things I have seen as an adult by other adults. Not children, not second graders. Fully grow adults who have jobs, influence other’s, are expected to behave within a code.

It maybe because I am a military brat. My family history is steeped in a military way of life. My great-grandfather was in the Army, my grandfather the Navy, my father the Air Force, my husband the Army, my uncle was Chief of Police, one of my best friends is a State Trooper. The CODE. You act a certain way and you will be treated accordingly. You lie, your treated as a liar, your honest, you will be trusted, you help those in need, you are rewarded with kindness. Yet, I know others don’t believe in this or they don’t act like it.

So how do I add that layer of protection on Knoah, given his appearance? That is what people will see first. How do I give him the resources to deal with the world outside my front door when the world is seething with depravity? How do I give him the words of encouragement that the world is good when we, right now encounter nothing but deception?

I as an adult cannot even wrap my head around this. I struggle everyday with this conflict. I want the world to be a peaceful place for all of us, but it’s not. What can I do to make it better?

Tonya Sweat @ 9:18 pm
Filed under: Daily and Support and Uncategorized
March of Dimes- Donation

Posted on Saturday 3 March 2007

https://www.marchofdimes.com/prematurity/b.asp?band_id=34494

Please visit Knoah’s March of Dimes band and consider making a donation in his name.

  The March of Dimes is a leader and pioneer in the fight to save babies. We have an outstanding track record of success and we are prepared to accomplish even greater things in the future to solve the problems of prematurity, birth defects, and low birthweight.

 

I have made this page available on the side bar labeled “March of Dimes- Knoah’s donation page”

Tonya Sweat @ 9:22 am
Filed under: Uncategorized
A PROUD Wife Moment!!

Posted on Saturday 3 March 2007

http://www.monroenews.com/apps/pbcs.dll/article?AID=/20070303/NEWS01/103030024

Article about the “Underground Railroad” Tour given March 2, 2007. My husband displays his best feature, communication!

Congratulations!

 

Tonya Sweat @ 7:27 am
Filed under: Uncategorized
1,2,3 and SCREAM!

Posted on Friday 2 March 2007

 

Geez, if the gates of he11 could open and release all it’s fury on us, it just did.

Ok, Knoah is doing well. He still has his gagging moments and it seems as if he is having seizures. We are at home now and I won’t leave him alone even to sleep. He just starts chocking for no reason.

Wed night, Hannah says to me “Mommy my tummy hurts, make it stop”. I told her to go lay down and I would get her some water. Well, she goes darting into the bathroom and…misses the toilet. During this Knoah starts vomiting, during the time he stops, he gets these bubbles in his mouth. I grab Knoah from Will and Will goes to tend to Hannah. I call the peds and I take Knoah in. Well he has two apnea alarms in the office. I take him over to the ER where he starts gagging in the carseat. I just miss hitting a car, trying to get to get to him. I am able to get him breathing again and run into triage.

There we get him situated and when my sister in law and mother show up, the beast decides to get me too. Running into the bathroom every 4 minutes didn’t seem exciting enough. Knoah continues to gag and have “blue” episodes. We transport him by ambulance to the Children’s Hospital, where in the ambulance, I continue to…well, you can figure it out. Horrible! We get him into the PICU where I was rendered useless. At 2:30. I decide I have to go the ER to seek treatment for me because I can’t take care of him, if I am not taking care of myself. 4 hours later and two fluid bags later, I am somewhat coherent. They never did find anything wrong, all labs for both of us came back normal?

**(NORMAL)** See, to me that’s not normal, but what is, right?

So they down load his monitor and conclude Knoah had a 23 second apnea. Try that for a sec, hold your breath for 23 seconds. Then wonder because babies lungs are smaller, how long should that be for us. BREATHE

We were released and took him up to Ann Arbor to the Neurosurgeon, where he concluded everything for Knoah’s brain is there and looks good. There is extra fluid, but nothing out of the ordinary for Achondroplastics. Good. He’ll folloe up in a few months just to make sure Knoah is staying on track.

It has been a wild three days. Another three days lost to Knoah and his attempt to make mommy pay for all those mean things she has ever done in her life. I guess my mom was right, you do end up having children who make you pay for things you did as a child. LOL, I say, Let me pay!! *SMILE*

Tonya Sweat @ 1:21 pm
Filed under: Uncategorized
Short Update

Posted on Thursday 1 March 2007

Knoah has been ill the last few days and Wed. he started vomiting and gagging. I took him to the peds office where we decided to take him to the MMH ER. They transported us to the Children’s hospital where he was place on observation in the PICU. The discharged us today and we went up to his appointment in Ann Arbor to see the Neurosurgeon. He is “ok” right now. We have had a few alarms (apnea, low heart rate). It doesn’t help that all of us are extremely sick with something. We have been vomiting and such. We are home now and we are going to lay down. I’ll post more later.

Tonya Sweat @ 1:48 pm
Filed under: Uncategorized