Merry Christmas and a Happy 2013
From The
Hoover Household
Andrew & Trina
Jonathan, Daniel and Sarah Grace
Friday, December 28, 2012
Christmas 2012
Wednesday, December 19, 2012
Santa Arrives by Helicopter to Oakwood Terrace Elementary- HEB ISD Eules...
Santa arrives At Oakwood Terrace Elementary school. Childhood should be absolutely magical. Similar flights took place all over HEB ISD
Sunday, December 9, 2012
Christmas stockings made by Mommy
I got inspired by pinterest and decided to dive into sewing. The last time I sewed Anything was in high school in 4h. I think it came out great.
Monday, November 19, 2012
Prayers needed
Daniel had some kind of seizure at school. Not the kind where you see people flopping like a fish on the floor like they're out of water... but the kid when you see kids staring into space unable to respond.. Daniel had this one at school where 2 other teachers and his teacher saw this one. The nurse took him to her office and he began responding to commands after 10 minutes. He was not aware of how he got to the nurses office... As soon as he got to the office prior to that I received a phone call no parent wants to get.. After these people called me I promptly got everyone else together and headed to school.
I am REALLY glad there are really caring adults who sprung into action and kept him safe. This was scary for all of us. Well except for Daniel who has no clue of what happened.
We decided that since he had a short period of time where he didn't respond, he was walking like a drunk sailor and his speech was sloppier we were driving to Cook's Children s hospital. It took us the better part of an hour to get there due to rush hour traffic and road construction. YAY Fort Worth! We wait two hours to get seen and by this time Daniel's his normal BOUNCY self, although he has a weird bump on the back of his head,and is tired and has a headache and Jonathan's alter ego came out as Scared y cat or Fret boy.... He tends to freak out in situations like this when we are in a medical setting. I don't think the apple falls very far from the tree as Andrew does the same thing and becomes not a very nice person. So instead of dealing with one kid with an issue now we had two. only one didn't see why everyone was worried about him.
We were released because they didn't have any space on their monitoring unit and I was told to call the neurologists nurse that we had seen on Sept. 6... It's 1230 pm and I left a detailed message at a little after 8 am.
I am asking for any and all prayer warriors out there to join us in praying for Daniel.
Thank you and be blessed
UPDATE: Daniel Will be having an EEG (1.5 hour) on December 4th.
Monday, November 5, 2012
Halloween and update
Update- Since last I posted we received a phone call from The Child Study Center in Fort Worth saying that we now have an appointment for Jonathan on February 14th! We got this call because somehow our mailman sent the letter back returned as a wrong address.(makes me wonder what ELSE I'm not getting).
School has it's challenges, but we are all having more good days than bad.
Jonathan was placed back on Dad's regular insurance and as soon as we choose a new pediatrician we will be getting referred to where he needs. I'd like for him to get seen by Genetics at Cooks Children's hospital.
Thanks for all the prayers and messages of support. Thank you.
Be blessed.
Sunday, September 9, 2012
6 Degrees and answered prayers in disguise
I've had a few people ask me to write here and tell you If I had an update. Up until two to 3 weeks ago I didn't have one. We had applied for a transfer to another school for Jonathan (who was going to be starting First grade). We have been patiently waiting for a spot to open up with a developmental pediatrician so we could be seen. We have been fighting with a pediatrician who really honestly needs some retraining in patient care.(won't go into that at length because trust me YOUR blood would boil).
About the day after I last posted, a dear friend of mine who saw my desperate, frustrated plea, sent out an email to their circle of friends and prayer warriors and made them aware of our situation.
I have to say that as I was seeing the responses of support I felt touched, if for nothing else to help my child.
We waited almost nearly the whole summer very nervously by our mail box, and by our phones waiting for a word on where our son would be attending school this year.We prayed a lot for the teachers and the principals who would be making this decision, and just give us a chance. We got our school supplies ready for both Jonathan and Daniel. We even took our supplies for Daniel early because we were afraid we would not be able to carry them in one trip.
We decided since we knew who Daniel's Preschool Program for Children with Disabilities(PPCD) teacher is that we would go visit her for meet the teacher...Good thing is that although it is a 2 year program and we are entering our second year, all the parents got to meet too. We planned this ahead of time because throughout the district there was only one night to do this in.
We do Love Daniel's teacher and ask that if you do pray please do. She has her own special needs child who just had surgery and is having complications. She also has 6 very special kids (Daniel's class) with unique needs and challenges. Please pray for the RIGHT person to come along and assist her as her assistant said Goodbye (with tears) as she was moving on to another opportunity.
On the morning if Meet the teacher...Daniel's teacher calls me. we have a very good conversation about this year. While she was talking to me my call waiting beeped and I saw a number that looked like a number from the district office. I was totally unaware of who it was because sometimes the schools use a common caller id. It was a principal. The principal of the school that Daniel goes to and she was calling to let me know that Jonathan would be joining his brother at the same school. Oh there was cheering and dancing at our house. Tears were shed and hugs were given.
What we were not aware of was that there were more blessings that day. when we got to the school and came in (although we were told they didn't know who his teacher was going to be) They told us who Jonathan's teacher was. We all went to meet her. As first meetings go it was like 2 cats meeting (without the sniffing). He was sizing her up totally. You could tell he was nervous. She was trying to get who he was in that little time. I felt like she was very neutral.I couldn't get a read. I took a picture with my phone of them together and although he smiled...he was still terrified. We left knowing he was in good hands. Daniel's teacher told me about her in her perspective. lots of experience with resource and special ed stuff. we'd like her.
we all Get home, and Jonathan is in tears. I take the time to find out what's going on. He's afraid. Afraid he'll have no friends, no one to turn to, and all the what if's he was living with because of last year with the bullies, and the falling down and everything. Desperate to stop his anxiety from taking over... I tell him to take a deep breath and tall him that he's going to have a super great year (because hope had been infused again)
That I would be there for him, that his teacher would be there if he needed something. and told him that if all else fails go talk to Daniel's teacher because she is trustworthy. He had met her before so not a hard sell.
I tell him I pray for him and a lot of people do. This quieted his fear. He became excited.
Since writing last I came down with some sort of evil thing that started with an ear infection and ended up in some kind of pneumonia. I was S-I-C-K for a month and a half. Being sick stinks. Being a MOM and being sick and needing to still function sucked worse. Especially when it was back to school time.
The last two weeks at school have been a terrific flurry of notes back and forth, paperwork and emails and phone calls. Thank God no discipline issues so far.
Jonathan's ARD (or IEP Meeting which is called an ARD because Texas does things differently) is This Thursday. I am pretty confident due to their track record that this will go well. This also means we are a little bit nervous as well. because .we . Have. An . Invested. Interest. in our son's Education. that and last year wasn't so great.
Last Wednesday morning Andrew gets a phone call from our therapy provider for Jonathan. They were having trouble getting him approved through medicaid. After Andrew spent the next 90 mins. on the phone discovering governmental inconsistencies that no one at any level understood why it was. He found out that although our 2 younger children still qualify, Jonathan doesn't because Dad is making slightly too much (hallelujah, Thank you Lord) the 2 younger are on a Birth to age 5 program and that has different requirements.
So Jonathan was left out there and we were not made aware he was possibly in their eyes without insurance. But with us, not so he has always been on Dad's health care. just we were limited to a tiny few health care providers and scarce care by specialists. Now we are in the process of finding a new pediatrician who can get us to see a new set of specialists. I found out it was medicaid and insurance that was making our lives way too difficult.
Jonathan has been temporarily taken off therapies until we get insurance back in the right place.
Jonathan I hope you have a great year in First grade and you make a lot of friends and win more hearts than ever at your new school.
Daniel, you've already stolen hearts, broken hearts (and blinds) have a great year and try to get as many happy behavior days as possible. You are so loved.
So that's our update. By the way Sarah misses her brothers. He asks for them by name. specifically Jonathan.
She is the shoe diva. and she will came to me, get on the ottoman with her shoes(or her brothers shoes) and will put her foot up and say shoe. she may eventually take it off and change her mind, but heh she can do that. She's in a size 7 shoe. She has a crazy sense of humor, and will de clothe herself at a moment's notice. she'll let you know someone took her diaper off as if someone else did it...even if it was Sarah.
She is now learning to climb stairs and prefers going down the stairs to going up. We still don't know where we stand as far as her development goes. so we'll see.
Go and Be blessed.
About the day after I last posted, a dear friend of mine who saw my desperate, frustrated plea, sent out an email to their circle of friends and prayer warriors and made them aware of our situation.
I have to say that as I was seeing the responses of support I felt touched, if for nothing else to help my child.
We waited almost nearly the whole summer very nervously by our mail box, and by our phones waiting for a word on where our son would be attending school this year.We prayed a lot for the teachers and the principals who would be making this decision, and just give us a chance. We got our school supplies ready for both Jonathan and Daniel. We even took our supplies for Daniel early because we were afraid we would not be able to carry them in one trip.
We decided since we knew who Daniel's Preschool Program for Children with Disabilities(PPCD) teacher is that we would go visit her for meet the teacher...Good thing is that although it is a 2 year program and we are entering our second year, all the parents got to meet too. We planned this ahead of time because throughout the district there was only one night to do this in.
We do Love Daniel's teacher and ask that if you do pray please do. She has her own special needs child who just had surgery and is having complications. She also has 6 very special kids (Daniel's class) with unique needs and challenges. Please pray for the RIGHT person to come along and assist her as her assistant said Goodbye (with tears) as she was moving on to another opportunity.
On the morning if Meet the teacher...Daniel's teacher calls me. we have a very good conversation about this year. While she was talking to me my call waiting beeped and I saw a number that looked like a number from the district office. I was totally unaware of who it was because sometimes the schools use a common caller id. It was a principal. The principal of the school that Daniel goes to and she was calling to let me know that Jonathan would be joining his brother at the same school. Oh there was cheering and dancing at our house. Tears were shed and hugs were given.
What we were not aware of was that there were more blessings that day. when we got to the school and came in (although we were told they didn't know who his teacher was going to be) They told us who Jonathan's teacher was. We all went to meet her. As first meetings go it was like 2 cats meeting (without the sniffing). He was sizing her up totally. You could tell he was nervous. She was trying to get who he was in that little time. I felt like she was very neutral.I couldn't get a read. I took a picture with my phone of them together and although he smiled...he was still terrified. We left knowing he was in good hands. Daniel's teacher told me about her in her perspective. lots of experience with resource and special ed stuff. we'd like her.
we all Get home, and Jonathan is in tears. I take the time to find out what's going on. He's afraid. Afraid he'll have no friends, no one to turn to, and all the what if's he was living with because of last year with the bullies, and the falling down and everything. Desperate to stop his anxiety from taking over... I tell him to take a deep breath and tall him that he's going to have a super great year (because hope had been infused again)
That I would be there for him, that his teacher would be there if he needed something. and told him that if all else fails go talk to Daniel's teacher because she is trustworthy. He had met her before so not a hard sell.
I tell him I pray for him and a lot of people do. This quieted his fear. He became excited.
Since writing last I came down with some sort of evil thing that started with an ear infection and ended up in some kind of pneumonia. I was S-I-C-K for a month and a half. Being sick stinks. Being a MOM and being sick and needing to still function sucked worse. Especially when it was back to school time.
The last two weeks at school have been a terrific flurry of notes back and forth, paperwork and emails and phone calls. Thank God no discipline issues so far.
Jonathan's ARD (or IEP Meeting which is called an ARD because Texas does things differently) is This Thursday. I am pretty confident due to their track record that this will go well. This also means we are a little bit nervous as well. because .we . Have. An . Invested. Interest. in our son's Education. that and last year wasn't so great.
Last Wednesday morning Andrew gets a phone call from our therapy provider for Jonathan. They were having trouble getting him approved through medicaid. After Andrew spent the next 90 mins. on the phone discovering governmental inconsistencies that no one at any level understood why it was. He found out that although our 2 younger children still qualify, Jonathan doesn't because Dad is making slightly too much (hallelujah, Thank you Lord) the 2 younger are on a Birth to age 5 program and that has different requirements.
So Jonathan was left out there and we were not made aware he was possibly in their eyes without insurance. But with us, not so he has always been on Dad's health care. just we were limited to a tiny few health care providers and scarce care by specialists. Now we are in the process of finding a new pediatrician who can get us to see a new set of specialists. I found out it was medicaid and insurance that was making our lives way too difficult.
Jonathan has been temporarily taken off therapies until we get insurance back in the right place.
She is the shoe diva. and she will came to me, get on the ottoman with her shoes(or her brothers shoes) and will put her foot up and say shoe. she may eventually take it off and change her mind, but heh she can do that. She's in a size 7 shoe. She has a crazy sense of humor, and will de clothe herself at a moment's notice. she'll let you know someone took her diaper off as if someone else did it...even if it was Sarah.
She is now learning to climb stairs and prefers going down the stairs to going up. We still don't know where we stand as far as her development goes. so we'll see.
Go and Be blessed.
Friday, July 13, 2012
6 degrees and a missed connection
Everybody knows someone who knows someone...
It's been proven to a degree we're all connected. Some say by as little as 6 connections. Check facebook, linkedIn etc. we are all connected. need proof? check your friends lists. or even better see who shares your pediatrician. It will blow your mind.
This is where our journey intersects. Some people I've "met" and have been real friends with for a long time. Our friendships have been more real than some of my local friends,and although we've never met face to face...If they needed me to I'd hop on an airplane and try to be there if I could.. We've shared life. Our struggles, our victories, our sorrows, even some real secrets that not even best friends would share.
Which leads me to the thought Okay if we're all connected and know someone, why is it I feel like I'm spinning my wheels,so to speak, when it comes to finding a pediatric specialist who can answer some questions about what Jonathan is going through.
Someone has a great developmental or Genetics specialist who specializes in super rare genetic disorders. Our is 21q22.11 deletion.. We've been told there are a handful of people around the world who have this "change", but he and I are the only ones that have experienced any issues that can be tied to it.
Please Feel free to share our story. At this point we've totally hit a DEAD END.
We live by DFW airport so we would be willing to fly somewhere for a consult.
You might as well have told my husband and I that this diagnosis totally means nothing, and means that we are totally unable to talk to any specialist in the Dallas-Fort Worth metroplex....
Map
Yes,I said metroplex. Where I live there are not one, but TWO very large cities near us (almost equal distance between the two). What I am finding is there is very surely no shortage of pediatricians in the area, There are 2 major Children's hospitals...BUT there are only 2 very little (and very full) Developmental and Behavioral Pediatricians...and only 2 genetics programs here. Dallas Children's Hospital only serves developmental peds. patients until they are 5... where they go after that who knows. Maybe someone thinks they all vanish or maybe they send all the over 5 to psychology/Psychiatry. We've been turned away from that as well due to lack of space.
I'm going to scream. For real. as of right now I think we're still on a waiting list...unless something purely diabolical happens and I just end up firing our pediatrician. That is always a good option as the one we have is HORRIBLE and their staff sucks. all this pediatrician knows to do is follow a checklist..no bedside manner at all. I've suffered through a lot of different docs... this one is in the running for the worst...okay second worst. The neurologist we saw whilst getting Jonathan's diagnosis was BAD.
This all leaves me feeling very frustrated and feeling like the only person moving to Texas benefited was my husband. Yes, there are plenty of new jobs here, if you are willing to take the risk and move here. But if you have a child with a chronic condition...You might want to weigh your options very carefully.
Now we live another day to fight on.. Be blessed while we start at square 2 (square one has already been done),
It's been proven to a degree we're all connected. Some say by as little as 6 connections. Check facebook, linkedIn etc. we are all connected. need proof? check your friends lists. or even better see who shares your pediatrician. It will blow your mind.
This is where our journey intersects. Some people I've "met" and have been real friends with for a long time. Our friendships have been more real than some of my local friends,and although we've never met face to face...If they needed me to I'd hop on an airplane and try to be there if I could.. We've shared life. Our struggles, our victories, our sorrows, even some real secrets that not even best friends would share.
Which leads me to the thought Okay if we're all connected and know someone, why is it I feel like I'm spinning my wheels,so to speak, when it comes to finding a pediatric specialist who can answer some questions about what Jonathan is going through.
Someone has a great developmental or Genetics specialist who specializes in super rare genetic disorders. Our is 21q22.11 deletion.. We've been told there are a handful of people around the world who have this "change", but he and I are the only ones that have experienced any issues that can be tied to it.
Please Feel free to share our story. At this point we've totally hit a DEAD END.
We live by DFW airport so we would be willing to fly somewhere for a consult.
You might as well have told my husband and I that this diagnosis totally means nothing, and means that we are totally unable to talk to any specialist in the Dallas-Fort Worth metroplex....
Map
Yes,I said metroplex. Where I live there are not one, but TWO very large cities near us (almost equal distance between the two). What I am finding is there is very surely no shortage of pediatricians in the area, There are 2 major Children's hospitals...BUT there are only 2 very little (and very full) Developmental and Behavioral Pediatricians...and only 2 genetics programs here. Dallas Children's Hospital only serves developmental peds. patients until they are 5... where they go after that who knows. Maybe someone thinks they all vanish or maybe they send all the over 5 to psychology/Psychiatry. We've been turned away from that as well due to lack of space.
I'm going to scream. For real. as of right now I think we're still on a waiting list...unless something purely diabolical happens and I just end up firing our pediatrician. That is always a good option as the one we have is HORRIBLE and their staff sucks. all this pediatrician knows to do is follow a checklist..no bedside manner at all. I've suffered through a lot of different docs... this one is in the running for the worst...okay second worst. The neurologist we saw whilst getting Jonathan's diagnosis was BAD.
This all leaves me feeling very frustrated and feeling like the only person moving to Texas benefited was my husband. Yes, there are plenty of new jobs here, if you are willing to take the risk and move here. But if you have a child with a chronic condition...You might want to weigh your options very carefully.
Now we live another day to fight on.. Be blessed while we start at square 2 (square one has already been done),
Wednesday, June 27, 2012
I wouldn't Trade it
Living with my kids from day to day. Some days are stellar. Everyone is so happy, getting along. A few hugs and kisses make everything even sweeter.
There have been more than a few really difficult days, when I've been dealing with behavior from Jonathan, trying to correct Daniel hoping he understands what he did. and hoping Sarah's development is moving along..
There is also the whole thing of therapy, and a pediatrician. Both amaze me at how frustrated and sad I feel for my kids, who are supposed to be helped by these "professionals" and their behavior, but in the end it seems we were all born in the wrong place or born the wrong whatever. BALONEY SANDWICH.
I can't live with any regrets about what I did was the best thing for them or not. It's impossible to go into the past and change anything. It's not ever going to be possible. I have to make the best decisions based on the information I have,even if it means digging for it myself.
I wouldn't trade this experience for anything because I cannot. I love these kids more than life, and if I could I would take their place if I could.
The only thing is they have to experience life and learn to adapt to the challenges in front of them. They have to stumble and fall to learn to walk. They have to be a little bit wobbly at first but once they learn to balance, will find it easier to walk and run.
Yes, most days lately at my house find one or both my kids , sounding like they are learning english as a second language (because of their language delays their brain has been structured to think english is very hard).
On another note on Saturday last...Sarah took her first steps!!!!!!!! we are all over the moon... and when she did this there were instant cheers from her loyal cheering section Jonathan, Daniel and mommy. She gave me the biggest grin as she took a play vacuum and toddled off with more steps.
Jonathan is within a couple of days of losing his first tooth. For a six year old this is big. He can't wait to lose it. He has been wiggling it with his tongue.
We have decided not to move, although we have physical challenges with the kids and their low muscle tone(especially Jonathan) ... I've been carrying Sarah up and down 3 floors of stairs and she is getting to the point where she is too heavy. We will be saving money to put down on a down payment for a house or another apartment somewhere else closer to Andrew's work at The Container Store. We were going to be charged another extra hundred dollars a month for the privilege of not having 3 flights of stairs to clime in 105 degree heat dragging at least one child.
Andrew is training for a position that seems to be changing for the second shift that is growing. He is totally loving that and that is just Andrew's personality to have him create his own position.
Daniel although it's almost been two weeks has been constantly talking about the Birthday party he and I attended at a place that had a bounce house with a slide. He simply can't stop talking about it. We try not to roll our eyes too much as this was a great memory for him, but we need some ideas of other things we can do with him to create memories that will be better than the great one that he has. Please for the LOVE of all things SANE MAKE HIM stop this ONE story.
Okay maybe you're laughing now...but realize just how blessed you are.
Blessings
There have been more than a few really difficult days, when I've been dealing with behavior from Jonathan, trying to correct Daniel hoping he understands what he did. and hoping Sarah's development is moving along..
There is also the whole thing of therapy, and a pediatrician. Both amaze me at how frustrated and sad I feel for my kids, who are supposed to be helped by these "professionals" and their behavior, but in the end it seems we were all born in the wrong place or born the wrong whatever. BALONEY SANDWICH.
I can't live with any regrets about what I did was the best thing for them or not. It's impossible to go into the past and change anything. It's not ever going to be possible. I have to make the best decisions based on the information I have,even if it means digging for it myself.
I wouldn't trade this experience for anything because I cannot. I love these kids more than life, and if I could I would take their place if I could.
The only thing is they have to experience life and learn to adapt to the challenges in front of them. They have to stumble and fall to learn to walk. They have to be a little bit wobbly at first but once they learn to balance, will find it easier to walk and run.
Yes, most days lately at my house find one or both my kids , sounding like they are learning english as a second language (because of their language delays their brain has been structured to think english is very hard).
On another note on Saturday last...Sarah took her first steps!!!!!!!! we are all over the moon... and when she did this there were instant cheers from her loyal cheering section Jonathan, Daniel and mommy. She gave me the biggest grin as she took a play vacuum and toddled off with more steps.
Jonathan is within a couple of days of losing his first tooth. For a six year old this is big. He can't wait to lose it. He has been wiggling it with his tongue.
We have decided not to move, although we have physical challenges with the kids and their low muscle tone(especially Jonathan) ... I've been carrying Sarah up and down 3 floors of stairs and she is getting to the point where she is too heavy. We will be saving money to put down on a down payment for a house or another apartment somewhere else closer to Andrew's work at The Container Store. We were going to be charged another extra hundred dollars a month for the privilege of not having 3 flights of stairs to clime in 105 degree heat dragging at least one child.
Andrew is training for a position that seems to be changing for the second shift that is growing. He is totally loving that and that is just Andrew's personality to have him create his own position.
Daniel although it's almost been two weeks has been constantly talking about the Birthday party he and I attended at a place that had a bounce house with a slide. He simply can't stop talking about it. We try not to roll our eyes too much as this was a great memory for him, but we need some ideas of other things we can do with him to create memories that will be better than the great one that he has. Please for the LOVE of all things SANE MAKE HIM stop this ONE story.
Okay maybe you're laughing now...but realize just how blessed you are.
Blessings
Friday, May 18, 2012
My 20 minute Makeover-The Freezer-The Container Store
We live in an apartment... which means having to deal with a lack of freezer space and all of the accompanying issues associated with it.
Being that my husband works for a company called The Container Store(c), they sell stuff that can organize your life. This isn't my first project, but the first one that is complete. As you can see our freezer is just like anyone else's. I cannot tell you what is in the back of this thing and I dreaded looking for anything.
Lovely to see I have an amazing amount of room in here now. Rest assured now no more falling objects. My toes will thank me later.
My Door however, still needs help.
Monday, April 30, 2012
Bluebonnets, Butterflies and Cowboys
During the spring these flowers are seen along roadsides everywhere. I can hardly believe it still. Just trust me on this one. These flower pictures were taken a few days before we had a tornado outbreak...and no we weren't hyperventilating over a dust devil.These tornadoes were throwing around 18 wheeler trailers. We had 12 confirmed tornado touchdowns. ..That was surely the scariest day a lot of us had. It's a miracle there was no deaths in this whole event.
Be blessed and go enjoy the outdoors and enjoy the life you have.
Thursday, March 15, 2012
Happy 6th Birthday, Jonathan-March 16th 2012
We are so incredibly blessed beyond words.
The Day you were born: Thursday
The Day You were born: You made me a mommy. You also made Andrew a daddy.
This made us your parents.
We had waited a long time for your arrival.
Many people you don't know prayed for your arrival. They also prayed for you while you were sick.
The Bible verse that came to mind on your birthday: John 3:16. King James Version.
16For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.
17For God sent not his Son into the world to condemn the world; but that the world through him might be saved.
The Day you were born: was the day we were scared for you. It was also the day we fell in love with you.
The Day you were Born...You became our hero. All 8 pounds and 14 ounces of you.
The Video has been updated and changed
I praise God for the strength and the perseverance that he has given you each day.
We are so proud of the child you are becoming..and even more proud of the things that you have had to overcome. I love you and I promise I will never ever let you forget you are LOVED. You are important. and you can do anything.
So on this day my sweet Jonathan, please know we LOVE you!...
Hugs and Kisses
Mommy and Daddy
and Daniel and Sarah
Go to our link to support our Walk to honor Jonathan and many, many other young friends who were born too early, too sick, or had birth defects... Our walk is April 21, 2012 in Fort Worth, Texas.
March for Babies Page
Friday, February 24, 2012
Stuff no one taught me about Parenthood
There are a lot of things no one taught me about parenthood.
This week was one of those weeks as a parent you totally dread. Or at least I know I did.
Murphy's Law-(Hoover Edition Volume 1-
If you have no time for something to happen...something will happen to something, somebody to make sure you never over schedule again.
This week was a horribly over scheduled week, and you know what happens... Every time you have something that you've waited months for Jonathan to have a speech evaluation done and Sarah wakes up with the scariest allergic reaction I've ever seen with my own eyes. We spent the rest of the day in an Emergency room, and thus we had to cancel Jonathan's speech eval.
Monday we had therapy , Because I am unable to be omnipresent (able to be several places at once) we had a very important genetics appointment for Thursday.
Tuesday we had more therapy for Daniel. This time the 2nd therapist couldn't make it. She is only available there twice a week and so we couldn't reschedule.
Wednesday we were supposed to have Jonathan go to the same place that Daniel gets therapy at, but Sarah woke up with the worst allergic reaction to an unknown substance I've ever seen. She was suffering from a tummy bug as well. While we did everything we possibly could (bath, benadryl,lotion) with no relief. After getting Daniel off the bus, I decided that I needed some help for her. NOT knowing this area and where the kids urgent facilities are STINKS.
I have to thank my friend Brooks for being Daniel Relief while I dealt with Sarah in the ER.
Don't let the ADS fool you wait times are NOT a good indicator of great care. We got triaged and sent to a bed in a corner and left there for 90 mins before anything was done.. Meanwhile Sarah was hating everything and everybody. I felt badly but all she really wanted to do was scream.
I really would have been way better off being told I did the right thing and be sent home with the blessing and the mandate to call her pediatrician. It would have saved me from having to manage everyone and try to get someone to pick Jonathan up from school. The doctor didn't want to do anything other than repeat what I had already done.. The nurse there was sweet though and told me how to constructively complain..
Stuff Jonathan Taught me...
Alarm clocks...who needs that. I haven't used an alarm clock since before Jonathan was born. Occasionally, we need one when there is something out of the ordinary or when our schedule's been disturbed.
Schedules keep mommy sane....but in the same breath being flexible to adapt to stuff works too.
You are EVERYTHING for your child...including a coach and advocate... but sometimes you need help you have no idea about.
It's never too early to have the bully talk and what to do when one is in your life.
We have plenty and we're only five. I pulled him off the bus because of the verbal and physical abuse no one ever saw there. The principal of his school can do nothing about the bullying problem at her school and no amount of screaming will fix this. By the way, the bullying started the second day of school.
He's been pushed down more times in PE and at recess than I'd like.
I'm praying against anything happening to Jonathan when one of these mean little overweight ginourmous kids jump on him and try to wrestle. He is in the terms of our genetics specialist "floppy" and over flexible.
Don't feel guilty. Because by being sad, he won't undesrtand why mommy is sad , thus making him worry.
Are there times that I feel responsible for what Jonathan has had to endure? Sure... case in point talking to the genetics specialist yesterday. He kept pointing out that I am also a carrier of what he has. so yes and they have medical records to prove that. I have to always keep in mind that as his mom KNOWING what he has to endure daily and has first hand knowledge of this I double feel for him.. We are doing everything humanly possible to get him everything he needs.
I would be willing to take Jonathan and get on a plane and fly to somewhere if we thought anyone could help figure out how to help him. So far as we have been able to tell from different sources we are the 3rd and 4th case of this discovered since they've been mapping the human genome. We are one of the only cases where they've seen an issue regarding the part of the specific Chromosome.
If you happen to know of any Pediatric Children's hospitals that specialize in Developmental or Genetic medicine please let me know.
Which one is it?
The human genome is made up of 23 pairs of Chromosomes. With thousands of variations. Each pair has it's own special function... You get half of mom's genetics from the egg and half from the sperm at fertilization. But even if there are perfect sets, the process of division can cause problems.
One half of our pair on Chromosome 21 is missing some material. This is also the smallest chromosome in the whole genome.
The Location of our Deletion is 21q22.11.
Go ahead Google it. Even Google is CLUELESS. genetic scientists have found that some cancers and even Alzheimers can be located there... but this is NOT US. Trust me on this. Googling a condition before getting interpreted results is quite scary.
Currently I also pray for every time we have to go up and down several flights of stairs to get to our apartment. Daniel is currently in physical therapy trying to work on stairs.
Daniel will be tested for this. However, we have to wait for the Children's hospital to order special equipment so that they can look at the specific chromosome..
Our hope is that Daniel does NOT have this, as Andrew isn't a carrier.
As for us that is what's going on. I hope this helps someone because I feel we're at a low point right now...and we are so ready to go up from here.
Be Blessed
This week was one of those weeks as a parent you totally dread. Or at least I know I did.
Murphy's Law-(Hoover Edition Volume 1-
If you have no time for something to happen...something will happen to something, somebody to make sure you never over schedule again.
This week was a horribly over scheduled week, and you know what happens... Every time you have something that you've waited months for Jonathan to have a speech evaluation done and Sarah wakes up with the scariest allergic reaction I've ever seen with my own eyes. We spent the rest of the day in an Emergency room, and thus we had to cancel Jonathan's speech eval.
Monday we had therapy , Because I am unable to be omnipresent (able to be several places at once) we had a very important genetics appointment for Thursday.
Tuesday we had more therapy for Daniel. This time the 2nd therapist couldn't make it. She is only available there twice a week and so we couldn't reschedule.
Wednesday we were supposed to have Jonathan go to the same place that Daniel gets therapy at, but Sarah woke up with the worst allergic reaction to an unknown substance I've ever seen. She was suffering from a tummy bug as well. While we did everything we possibly could (bath, benadryl,lotion) with no relief. After getting Daniel off the bus, I decided that I needed some help for her. NOT knowing this area and where the kids urgent facilities are STINKS.
I have to thank my friend Brooks for being Daniel Relief while I dealt with Sarah in the ER.
Don't let the ADS fool you wait times are NOT a good indicator of great care. We got triaged and sent to a bed in a corner and left there for 90 mins before anything was done.. Meanwhile Sarah was hating everything and everybody. I felt badly but all she really wanted to do was scream.
I really would have been way better off being told I did the right thing and be sent home with the blessing and the mandate to call her pediatrician. It would have saved me from having to manage everyone and try to get someone to pick Jonathan up from school. The doctor didn't want to do anything other than repeat what I had already done.. The nurse there was sweet though and told me how to constructively complain..
Stuff Jonathan Taught me...
Alarm clocks...who needs that. I haven't used an alarm clock since before Jonathan was born. Occasionally, we need one when there is something out of the ordinary or when our schedule's been disturbed.
Schedules keep mommy sane....but in the same breath being flexible to adapt to stuff works too.
You are EVERYTHING for your child...including a coach and advocate... but sometimes you need help you have no idea about.
It's never too early to have the bully talk and what to do when one is in your life.
We have plenty and we're only five. I pulled him off the bus because of the verbal and physical abuse no one ever saw there. The principal of his school can do nothing about the bullying problem at her school and no amount of screaming will fix this. By the way, the bullying started the second day of school.
He's been pushed down more times in PE and at recess than I'd like.
I'm praying against anything happening to Jonathan when one of these mean little overweight ginourmous kids jump on him and try to wrestle. He is in the terms of our genetics specialist "floppy" and over flexible.
Don't feel guilty. Because by being sad, he won't undesrtand why mommy is sad , thus making him worry.
Are there times that I feel responsible for what Jonathan has had to endure? Sure... case in point talking to the genetics specialist yesterday. He kept pointing out that I am also a carrier of what he has. so yes and they have medical records to prove that. I have to always keep in mind that as his mom KNOWING what he has to endure daily and has first hand knowledge of this I double feel for him.. We are doing everything humanly possible to get him everything he needs.
I would be willing to take Jonathan and get on a plane and fly to somewhere if we thought anyone could help figure out how to help him. So far as we have been able to tell from different sources we are the 3rd and 4th case of this discovered since they've been mapping the human genome. We are one of the only cases where they've seen an issue regarding the part of the specific Chromosome.
If you happen to know of any Pediatric Children's hospitals that specialize in Developmental or Genetic medicine please let me know.
Which one is it?
The human genome is made up of 23 pairs of Chromosomes. With thousands of variations. Each pair has it's own special function... You get half of mom's genetics from the egg and half from the sperm at fertilization. But even if there are perfect sets, the process of division can cause problems.
One half of our pair on Chromosome 21 is missing some material. This is also the smallest chromosome in the whole genome.
The Location of our Deletion is 21q22.11.
Go ahead Google it. Even Google is CLUELESS. genetic scientists have found that some cancers and even Alzheimers can be located there... but this is NOT US. Trust me on this. Googling a condition before getting interpreted results is quite scary.
Currently I also pray for every time we have to go up and down several flights of stairs to get to our apartment. Daniel is currently in physical therapy trying to work on stairs.
Daniel will be tested for this. However, we have to wait for the Children's hospital to order special equipment so that they can look at the specific chromosome..
Our hope is that Daniel does NOT have this, as Andrew isn't a carrier.
As for us that is what's going on. I hope this helps someone because I feel we're at a low point right now...and we are so ready to go up from here.
Be Blessed
Friday, January 27, 2012
Happy 1st (Belated) Birthday Sarah Grace
Sarah Grace's first Birthday Cake...
In our family on a child's first birthday we allow and encourage the birthday person to eat and smash a small cake. And since our grocery store had a coupon we got the smash cake free when we bought another one.
She is a very happy and amazing little girl, who last night was playing with Jonathan, like they were taking pictures and she said: Chee(se).
You are Amazing Sarah. We Love and adore you our beautiful princess (in a house full of boys).
Love Mom and Dad
Be Blessed.
(we have some of the most amazing friends and family all over the place that we love and MISS)
HUGS to all
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