The rain has been very steady around here and sad to say so have the seizures.
Yesterday was a one of those days of seizing and sleeping. When he finally was awake we had several hours of fussiness and crying. Motrin didn't help, mommies arms didn't help, sister in his face trying to play with him didn't help, even a special someone who he hadn't seen for a few weeks couldn't help him...
something was bugging him, but what it was we will never know...
This morning he has already had 2 whoppers followed by one large and one small cluster.
The clouds have been looming overhead all weekend, feels like autumn months around here, I am almost ready to put a fire on...yes, that damp and dreary...
BUT there is one ray of light shining through the clouds...
Daddy's home!
Sunday, May 30, 2010
Wednesday, May 26, 2010
just like that...
my YAHOO....turn in to UGHHHH!!!
2 Tonic Seizures followed by a cluster of spasms all before
8:30 a.m. and within 1 hour.
so far?
This day stinks!!!!!
2 Tonic Seizures followed by a cluster of spasms all before
8:30 a.m. and within 1 hour.
so far?
This day stinks!!!!!
Tuesday, May 25, 2010
puffed veggie stick
I really don't know what possessed me to stick a Trader Joe"s puffed Veggie Stick in Hudson's mouth.
It has been months since he has eaten or taken a bottle orally.
He can aspirate, choke, throw-up....
So why did I put the end of a veggie stick up to his cute little heart shaped lips?
No clue why I let the puff stick sit there til I heard a.... "crunch!"
then I sat and watched to see what he would do...
he has never "crunched" anything or used his teeth in an eating fashion...
only baby foods, yogurt, applesauce...
but he did GREAT and actually seemed to like it and ate almost the whole stick!!!!
Out of all the little crunches he did he only coughed once...with no choking whatsoever!
Think I would be looked at as a BAD mom among the therapists because I did this?
I think it is pretty cool and want to tell speech on Friday but this may taint their view of me!
And by the way...
Hudson only had 2 tonics yesterday and today....
only a couple single spasms and a sorta half -strength tonic....
he slept a ton yesterday (12-7p.m. then thru the night) for 45 min. the pre-school teacher and vision teacher tried to wake him up and no-such-luck and it was not due to any seizures!
He went to bed at 9:30 p.m. and as far as I know slept through the night, until about 8:30 this morning.
He is wild when awake...making lots of noise and moving lots, and he had a great session with his new P.T.
So...not sure what is going on with my little man...the nasal antibiotic seemed to clear up any cold he may have caught earlier....
we don't have many "good" days....at all...so what is up?
cuz I have to celebrate the partial breaks we DO get!!!!!!
Sunday, May 23, 2010
Signed-Sealed-Delivered
I had my phone consultation with the Research Coordinator last Wednesday.
The nice part...
she knows Hudson, and me.
It was the same gal that we saw and I spoke to weekly/monthly when Hudson was
on that research drug Ganaxolone.
It helped in making me feel very comfortable to ask all of my questions pertaining to
this latest research with this DNA testing.
I found out that there are 20 children that will be involved in this study.
There is a tier that has been created and right now they are working on tier 1-3.
Hudson is in this tier. What this means is that basically tier 1 is the most medically fragile and
greatly affected children. Dr. Santeto basically had much to do with who would be chosen for this study, he submitted names...which is why he were chosen. Laurie told me he is not in tier 1, but that he is middle of the row, so I am guessing tier 3. I told her, in my opinion, from what I see, and read, he is among the most fragile and affected and yet we have no real answers other than seizures due to electron transport chain deficiency.
The big question of course is, is there a "down-side" to participating in this study...because I don't see one, in fact I am thrilled we were chosen and able to do this.
She agreed...really no down-side other than you could get information you may not want to hear but I really can't imagine hearing anything worse than what I have heard in the past 3 years.
There is also a possibility that there could be nothing found, no further information. Again, no loss, really.
Some families have already gotten there results through this study. It can take up to 2 years, but it sounds like most are getting results pretty quickly.
For us, the info will go to Dr. Saneto, and then he will give us the results.
This study is only being done at Seattle Children's and the hope is this will become a "clinic" test in diagnosing mitochondrial disease.
Pretty amazing and very cool to be a part of something that could be beneficial to future mito families, even if it proves to give us no information on Hudson...it may help others get a less invasive way to diagnose this disease.
Laurie and I also talked about how Mito needs research money so bad. So many illnesses are treated at the "surface" level and are never researched at the "core" level. Meaning, as Laurie told me, it is believed many cancers, Parkinson's, Alzheimer's...and many more diseases/illnesses that have sudden onset are treated just for the disease at hand, but how do these appear out of nowhere in people? It is believed in the "mito world" that many of these are the result of mitochondrial dysfunction. Research costs so much money, but if we tackled the core of these diseases (the mitochondria) then we would get to the root of the problem and hopefully eradicate alot of these illnesses. Instead we are satisfied with not knowing why people come down with such sickness as long as we can treat and cure the symptom at hand.
This is why I am so grateful to have Hudson in Seattle. I know if any gains are made in mito research it will likely be here and to be a part of it and have opportunities such as this one is why we remain here.
God has truly turned so much of our pain and suffering to good.
I see things so much clearer when little things are revealed to me.
I continue to search for the miraculous ways God works in our lives daily.
No...it's certainly has not been in the obvious way of a miracle...an end to seizures, a miracle drug, etc.
but God does show his presence and his divine hands touching our lives on a daily basis...it is up to me to keep my eyes wide open to see what will be shown next.
I am praying for some answers by doing this test.
I am praying it will help us in our situation or somehow in the future.
I am praying this will help future families and their children affected by this disease.
I believe God has great purpose for Hudson and his life.
The papers went in the mail on Thursday and I will be called next week when they have submitted his DNA into the study.
Please join me in prayers for answers.
***********
Hudson's tonics remain steady, not quite as many, but I believe he has now come down with yet another cold.
The nice part...
she knows Hudson, and me.
It was the same gal that we saw and I spoke to weekly/monthly when Hudson was
on that research drug Ganaxolone.
It helped in making me feel very comfortable to ask all of my questions pertaining to
this latest research with this DNA testing.
I found out that there are 20 children that will be involved in this study.
There is a tier that has been created and right now they are working on tier 1-3.
Hudson is in this tier. What this means is that basically tier 1 is the most medically fragile and
greatly affected children. Dr. Santeto basically had much to do with who would be chosen for this study, he submitted names...which is why he were chosen. Laurie told me he is not in tier 1, but that he is middle of the row, so I am guessing tier 3. I told her, in my opinion, from what I see, and read, he is among the most fragile and affected and yet we have no real answers other than seizures due to electron transport chain deficiency.
The big question of course is, is there a "down-side" to participating in this study...because I don't see one, in fact I am thrilled we were chosen and able to do this.
She agreed...really no down-side other than you could get information you may not want to hear but I really can't imagine hearing anything worse than what I have heard in the past 3 years.
There is also a possibility that there could be nothing found, no further information. Again, no loss, really.
Some families have already gotten there results through this study. It can take up to 2 years, but it sounds like most are getting results pretty quickly.
For us, the info will go to Dr. Saneto, and then he will give us the results.
This study is only being done at Seattle Children's and the hope is this will become a "clinic" test in diagnosing mitochondrial disease.
Pretty amazing and very cool to be a part of something that could be beneficial to future mito families, even if it proves to give us no information on Hudson...it may help others get a less invasive way to diagnose this disease.
Laurie and I also talked about how Mito needs research money so bad. So many illnesses are treated at the "surface" level and are never researched at the "core" level. Meaning, as Laurie told me, it is believed many cancers, Parkinson's, Alzheimer's...and many more diseases/illnesses that have sudden onset are treated just for the disease at hand, but how do these appear out of nowhere in people? It is believed in the "mito world" that many of these are the result of mitochondrial dysfunction. Research costs so much money, but if we tackled the core of these diseases (the mitochondria) then we would get to the root of the problem and hopefully eradicate alot of these illnesses. Instead we are satisfied with not knowing why people come down with such sickness as long as we can treat and cure the symptom at hand.
This is why I am so grateful to have Hudson in Seattle. I know if any gains are made in mito research it will likely be here and to be a part of it and have opportunities such as this one is why we remain here.
God has truly turned so much of our pain and suffering to good.
I see things so much clearer when little things are revealed to me.
I continue to search for the miraculous ways God works in our lives daily.
No...it's certainly has not been in the obvious way of a miracle...an end to seizures, a miracle drug, etc.
but God does show his presence and his divine hands touching our lives on a daily basis...it is up to me to keep my eyes wide open to see what will be shown next.
I am praying for some answers by doing this test.
I am praying it will help us in our situation or somehow in the future.
I am praying this will help future families and their children affected by this disease.
I believe God has great purpose for Hudson and his life.
The papers went in the mail on Thursday and I will be called next week when they have submitted his DNA into the study.
Please join me in prayers for answers.
***********
Hudson's tonics remain steady, not quite as many, but I believe he has now come down with yet another cold.
Tuesday, May 18, 2010
Seizures .....endless seizures
It has been really bad lately.
Just seems to be getting worse with every passing day.
It sucks.
I finally called the mito nurse to vent.
To tell her how bad Hudson has been lately...
it all went to voice mail, but she did email me back later this afternoon.
Dr. Saneto is once again raising his Lamictal.
We are going from 100 mg 2x per day to..
200mg 2x per day.
Lately it has been such a vicious cycle....
He has a tonic seizure
followed by a large cluster of spasms
followed by throwing up
followed by passing out...for hours
Yep, back in this pattern
It is so bad that the only time he is awake is to go into these gawd-awful seizures
and then the pattern happens and he falls beck asleep only to wake and do it again
and again
and again!
The vision teacher came over for the first official time yesterday and
Hudson had a seizure right before she got here.
He threw up all over himsself because I was answering the phone to let her in our neighboorhood
it was all over his face and clothes.
Cleaned him up, she knocks on the door and he is gone...to seizure-ville...nothing we could do was going to wake him up...she turned around and left.
Today he has seized and slept all day.
We had a GI apt. at Children's.
First time I got an A+ in this medical crud I drown in.
Dr. Burpee (our GI doc...the name kills me!) told me he has never seen a G-tube site like Hudson's.
It is by far the cleanest, most perfect looking G-tube site he has EVER seen.
What can I say...I guess I am just good like that! Ha! (made me chuckle)
He wanted to know my "secret"...I guess I am just completely anal about bathing him. Rarely does he go with out a bath at night, other than that I have no idea why we are so good lookin' in the button!
Praying the Lamictal helps...thus far...doing nothing...not feeling to hopeful. Can't imagine yet another increase helping but we'll see.
Keep Hudson in your prayers. He is really, really struggling with seizures!
Just seems to be getting worse with every passing day.
It sucks.
I finally called the mito nurse to vent.
To tell her how bad Hudson has been lately...
it all went to voice mail, but she did email me back later this afternoon.
Dr. Saneto is once again raising his Lamictal.
We are going from 100 mg 2x per day to..
200mg 2x per day.
Lately it has been such a vicious cycle....
He has a tonic seizure
followed by a large cluster of spasms
followed by throwing up
followed by passing out...for hours
Yep, back in this pattern
It is so bad that the only time he is awake is to go into these gawd-awful seizures
and then the pattern happens and he falls beck asleep only to wake and do it again
and again
and again!
The vision teacher came over for the first official time yesterday and
Hudson had a seizure right before she got here.
He threw up all over himsself because I was answering the phone to let her in our neighboorhood
it was all over his face and clothes.
Cleaned him up, she knocks on the door and he is gone...to seizure-ville...nothing we could do was going to wake him up...she turned around and left.
Today he has seized and slept all day.
We had a GI apt. at Children's.
First time I got an A+ in this medical crud I drown in.
Dr. Burpee (our GI doc...the name kills me!) told me he has never seen a G-tube site like Hudson's.
It is by far the cleanest, most perfect looking G-tube site he has EVER seen.
What can I say...I guess I am just good like that! Ha! (made me chuckle)
He wanted to know my "secret"...I guess I am just completely anal about bathing him. Rarely does he go with out a bath at night, other than that I have no idea why we are so good lookin' in the button!
Praying the Lamictal helps...thus far...doing nothing...not feeling to hopeful. Can't imagine yet another increase helping but we'll see.
Keep Hudson in your prayers. He is really, really struggling with seizures!
Monday, May 17, 2010
Birth-days/ Mother's Day all rolled into one weekend!!!
I can honestly say I was not saturated in sadness on Friday, Hudson's birthday.
I believe it was the first time since I knew his life would not be as planned...
that I didn't feel sad and teary eyed. I really felt so happy for his life and our time together as a family sharing in this celebration.
Although the seizure monster does not discriminate and leave us alone on birthday's,
(for some reason I always think he will catch a break on his day)
but nope...
I still felt the celebration and the joy all day...
from friends
family
bloggers
it was a fantastic day for our little guy, and I am certain he felt special and honored!
We did as planned and headed to Seattle in glorious 70ish sunshiny weather.
We first went to the Ivars at the pier and had fish and chips and chowder
Then to Pike Place Market, which we did a quick walk through because the kids had their hearts set on going to the Seattle Center for some rides....
We made it home just in time for the celebration to begin at my moms house.
My brother and Fred were there and so were our good family friends the White's.
Hudson stayed up chatting with us ladies until 11:30 p.m. while all the kids and guys were snoozing!
No way was Hudson missing out on any of his party!
That is until we got home and got all cleaned up and tucked into bed...
Sunday I was treated to breakfast in bed by my kids and husband.
They really spoiled me as I stayed in bed until 12:30 in the afternoon!
Today I am a year older and so we also celebrated me Sunday since Paul had to leave at 3 a.m. this morning for the airport :(
Breakfast in bed, washed and detailed my car, and dinner out alone!
He also made me appointments for a spa day today and I was massaged and rubbed and exfoliated and parrafinned and nails and toes polished! It was over 3 hours of pampering today!!!!
Then my mom and a friend took me out for lunch afterward...
I am loved by so many, and have so many special people in my life...
between the phone calls
emails
facebook
I tell ya...this girl feels the love!
I believe it was the first time since I knew his life would not be as planned...
that I didn't feel sad and teary eyed. I really felt so happy for his life and our time together as a family sharing in this celebration.
Although the seizure monster does not discriminate and leave us alone on birthday's,
(for some reason I always think he will catch a break on his day)
but nope...
I still felt the celebration and the joy all day...
from friends
family
bloggers
it was a fantastic day for our little guy, and I am certain he felt special and honored!
We did as planned and headed to Seattle in glorious 70ish sunshiny weather.
We first went to the Ivars at the pier and had fish and chips and chowder
Then to Pike Place Market, which we did a quick walk through because the kids had their hearts set on going to the Seattle Center for some rides....
My brother and Fred were there and so were our good family friends the White's.
No way was Hudson missing out on any of his party!
That is until we got home and got all cleaned up and tucked into bed...
They really spoiled me as I stayed in bed until 12:30 in the afternoon!
Today I am a year older and so we also celebrated me Sunday since Paul had to leave at 3 a.m. this morning for the airport :(
Breakfast in bed, washed and detailed my car, and dinner out alone!
He also made me appointments for a spa day today and I was massaged and rubbed and exfoliated and parrafinned and nails and toes polished! It was over 3 hours of pampering today!!!!
Then my mom and a friend took me out for lunch afterward...
I am loved by so many, and have so many special people in my life...
between the phone calls
emails
I tell ya...this girl feels the love!
Thursday, May 13, 2010
3 years later...no sappy talk...only celebration!
At least that is what I am telling myself!
Tomorrow is Hudson's 3rd birthday.
Time has flown and stood still all in the same breath.
Many of you know what I mean.
My mom is busy preparing our gathering tomorrow night.
Paul is flying home tonight, and a special day is planned for tomorrow.
Hunter doesn't know it but...
Seattle is having some gorgeous weather AND
it's a special boy's third birthday AND
our family, The Austin 5, are all together...
so Hunter is playing hookie from school and we are heading to Seattle for some fun in the sun!!!!!!
I think it will be a great way to not feel sappy. To make it feel like a special family day.
Then we get to come home to family gathered to celebrate what an amazing little warrior we are blessed with!
We have a very fitting theme for our 3 year olds birthday....IRON MAN! cuz that's exactly what he is!
NO SAP HERE....bound and determined to keep my heart and mind light, free from the heaviness of this disease...I owe it to Hudson and my family who is making this birthday so special for him!
We did get a early birthday present today...
I am very excited about this, and so I share....
This came in the mail from Seattle Children's...
Dear Mr. and Mrs. Austin,
I am a Physician at Seattle Children's and Dr. Saneto submitted your child's name as a potential candidate for a research test I'm developing. I am conducting a research study to develop a new test for Mitochondrial Disorders. The new technology used in this study will allow testing of hundreds of genes at the same time and hopefully provide a rapid, minimally invasive test to diagnose mitochondrial disorders. With your permission, we would like to use some of Hudson's banked DNA and test it using this new method. If you choose to participate, we take a sample of Hudson's DNA and label it with a unique study code and test the sample.
...............We are doing this study to develop a diagnostic test for mitochondrial diseases using a nest generation sequencing genome analyzer. This new technology allows high-throughput sequencing process for many genes at once. If patients are suspect of having mitochondrial disease, they usually undergo muscle biopsy to measure the enzyme which produces the energy. We are developing a diagnostic blood test for mitochondrial disease which can determine the alteration in the gene responsible for mitochondrial disorders. The purpose of the study is to find out if our development is good enough to be used for patient care and diagnosis. Currently, this test is not clinically available.
I am thrilled about this for many reasons! To get more info on Hudson specifically, and also knowing this could aid in helping families in the future not have to sent their child into day surgery to cut his/her thigh open and remove muscle and then wait months to get the results. Dr. Saneto had his DNA banked at our last appointment, so we don't have to do anything more than that, Hudson had the blood draw already!
I am hoping it will give us the info we need to know if this could affect Hailey and Hunter when they have kids one day. Narrowing it to a specific gene will allow them to make informative decisions. It could also reveal that it was a spontaneous mutation and only Hudson carries the gene. In the documents it says this test will take up to 2 years, so the research and answers will not happen over night.
In my opinion, this is a wonderful opportunity, coming at a perfect time, and I am ready to sign at the dotted line!
Have to share a little concert Hudson got yesterday in preparation for his birthday...what a lucky boy he is to be loved by so many....
Hailey and her best friend Victoria entertain Hudson...
Enjoy!
HAPPY BIRTHDAY BABY BOO-BOO....your family adores you!
Tomorrow is Hudson's 3rd birthday.
Time has flown and stood still all in the same breath.
Many of you know what I mean.
My mom is busy preparing our gathering tomorrow night.
Paul is flying home tonight, and a special day is planned for tomorrow.
Hunter doesn't know it but...
Seattle is having some gorgeous weather AND
it's a special boy's third birthday AND
our family, The Austin 5, are all together...
so Hunter is playing hookie from school and we are heading to Seattle for some fun in the sun!!!!!!
I think it will be a great way to not feel sappy. To make it feel like a special family day.
Then we get to come home to family gathered to celebrate what an amazing little warrior we are blessed with!
We have a very fitting theme for our 3 year olds birthday....IRON MAN! cuz that's exactly what he is!
NO SAP HERE....bound and determined to keep my heart and mind light, free from the heaviness of this disease...I owe it to Hudson and my family who is making this birthday so special for him!
We did get a early birthday present today...
I am very excited about this, and so I share....
This came in the mail from Seattle Children's...
Dear Mr. and Mrs. Austin,
I am a Physician at Seattle Children's and Dr. Saneto submitted your child's name as a potential candidate for a research test I'm developing. I am conducting a research study to develop a new test for Mitochondrial Disorders. The new technology used in this study will allow testing of hundreds of genes at the same time and hopefully provide a rapid, minimally invasive test to diagnose mitochondrial disorders. With your permission, we would like to use some of Hudson's banked DNA and test it using this new method. If you choose to participate, we take a sample of Hudson's DNA and label it with a unique study code and test the sample.
...............We are doing this study to develop a diagnostic test for mitochondrial diseases using a nest generation sequencing genome analyzer. This new technology allows high-throughput sequencing process for many genes at once. If patients are suspect of having mitochondrial disease, they usually undergo muscle biopsy to measure the enzyme which produces the energy. We are developing a diagnostic blood test for mitochondrial disease which can determine the alteration in the gene responsible for mitochondrial disorders. The purpose of the study is to find out if our development is good enough to be used for patient care and diagnosis. Currently, this test is not clinically available.
I am thrilled about this for many reasons! To get more info on Hudson specifically, and also knowing this could aid in helping families in the future not have to sent their child into day surgery to cut his/her thigh open and remove muscle and then wait months to get the results. Dr. Saneto had his DNA banked at our last appointment, so we don't have to do anything more than that, Hudson had the blood draw already!
I am hoping it will give us the info we need to know if this could affect Hailey and Hunter when they have kids one day. Narrowing it to a specific gene will allow them to make informative decisions. It could also reveal that it was a spontaneous mutation and only Hudson carries the gene. In the documents it says this test will take up to 2 years, so the research and answers will not happen over night.
In my opinion, this is a wonderful opportunity, coming at a perfect time, and I am ready to sign at the dotted line!
Have to share a little concert Hudson got yesterday in preparation for his birthday...what a lucky boy he is to be loved by so many....
Hailey and her best friend Victoria entertain Hudson...
Enjoy!
HAPPY BIRTHDAY BABY BOO-BOO....your family adores you!
Monday, May 10, 2010
A packed post of Hudson happenings and more...
So much has been going in our little Hudson world.
For starters....
last Friday I had his transition meeting with the school district. His transition from the birth to 3 program ending and starting "preschool" I put it in quotes, because for a child like Hudson putting him in school is a joke.
It would be like putting a newborn baby plop in the center of a bunch of 3 year old's and expect him to gain something...why would you? I can tell you he would only gain many visits to the E.R. with the slew of germs floating around. I had heard and imagined I would have to fight for Hudson's rights....to get him the specific and only type of "schooling" that would be appropriate for him...home based therapy. I am happy to say that in this period of preparing for all of this to go down I never had to "fight" for what I wanted for him.
All this to say, he qualifies for everything (duh!) as I heard them tell me he is at 0-3 months in all areas.
I don't really let this bother me too much, and it wasn't shocking or a tear jerking moment for me to be among all these school therapists and hear this about Hudson. Some of them did an evaluation before our meeting, some just asked me questions over the phone, some was my first meet and greet.
They all know he is riddled with seizures and meds...they are familiar with the mask her wears...I also hold on to knowing this mask could be lifted, development could kick in...today, not so much.
So...on comes a new team....we get...
*speech
*ot
*pt
*vision
*preschool teacher
(Hudson also qualified for ESY...extended school year, for summer months)
they will piggy back, all coming once a week for about an hour, on M, T, Fri.
Hudson will also keep his current O.T. from the Elks on Wed. and clinic P.T. on Mon.
A fact in all of this from the school...
out of 1,200 special ed students, Hudson is the only one receiving home based therapy! Aren't we special?
Again...glad I didn't have to fight for this, glad they understand the need...
I would hope they would though....Hudson's neuro did write a letter stating it could be life threatening for Hudson to be in a school setting....don't think they get many of those letters.
So lots of change headed our way for our little guy...
and I am bracing myself and ready...praying I like all these new faces that will be walking through our doors!
Today we had a appointment with Dr. Carter...pulmonary. Hudson was actually under his care during our last admit in March, so it was good to see him today. First thing he said is that Hudson looks really good...so much better! He wants Hudson off the augmentin, which will happen tomorrow, and continue the nasal mist antibiotic at least through the summer. He wants to try the med again for the secretions now that the infection is gone. Hudson's secretions have been bad...just lots of salivary drooling when upright. He never had this problem before, but, like Dr. Carter said, so much play into the changes we see in Hudson. Changes in seizures, increase and various med changes, the disease itself and the effects on his muscles...
I really like Dr. Carter. I told him about our family situation, and wanting to take Hudson to Nevada for 4-6 weeks and asked him his opinion. His thoughts were if Hudson appears as he does today, he didn't see a problem with him going. He said he would be readily available by phone as should Dr. Saneto, if anything arises, and we could always fly him home...worst case scenario, if need be. He gave me script for Augmentin, the pill form, which has a 1 year shelf life. He told me to fill it, and take it to Vegas with me in case Hudson comes down with anything, or if the color of his mucous changes, etc. He felt that would be a good measure of comfort and defense knowing I have that to give him, not having to seek a dr. out....I was very happy he did this for me. It does make me feel better, and makes me think I may actually be able to take Hudson and the kids in July....I actually felt smile-e after the appointment!
I mentioned last week a certain someone's birthday was coming up...yup, Hudson will be 3 Friday.
I don't want to get into this too much, other than to say his birthday's have been very hard on me. I usually put the happy, celebratory face on, while I am cringing and crying inside, wishing all would leave the "party" so I can just sit and have my cry fest. This year I am really trying to focus on the fact that there really is much to celebrate. That Hudson, in spite of swine flu, and a whole bunch of other infections and cold, and 3 very recent E.R.hospital stays...he is here, and he fights like no kid I have ever seen fight...and he is such an amazing kid with super-duper strength that comes only from God...my focus is not about him turning 3, my focus will be that I and those who are blessed to know him, can celebrate all his three years has given and has taught so many. What a gift his 3 years has been...each day is such a gift, I don't want to waste my time being sad over what is not his, I will choose to focus on all that he gives, all that pours out from such a tiny body.
STANDER UPDATE....
I have been doing my homework, getting Hudson up and guess what????
Tonight NO CRYING!!!! He was up for 5 min. without tears or seizures! Pretty cool. He did start to fuss a little and I am pretty sure whaling was next but I got him out before it could happen.
One crazy thing....5 minutes in the stander and I take him out and both his legs and feet quiver....
muscle fatigue in 5 minutes!
Another Hudson happening....
This may sound horrible to some, but for me I have to share what gift my mom is giving Hudson for his birthday, because I find a huge amount of relief in it.
My mom asked if she could do Hudson's birthday party as her gift for him. I know as his mom, I should want to plan and throw it just like I do for my other 2, year after year...and maybe I feel a bit guilty because I am not planning it...BUT...when she offered, I felt a huge sense of relief. I have so much on my plate, I just didn't know if I had it in me to plan a party...and yet Hudson totally deserves the grandest party ever...I think it is an amazing and wonderful gift for Hudson and for me! :)
I have no clue what she is making or doing, but I know it will be perfect...mainly family, some friends, and possibly 2 very special current therapists that hold dear to our hearts...it will be a special day indeed!
That's the latest in Hudson's world.
One sorta funny from the world of Hailey....
she made this at church...a poster type thing on MOM...where she filled in the blanks (I will type as she spelled)...
My Mom is....loveing
My Mom loves...me
My mom's favorite...kids
My mom needs...cloth
My mom wants...no more segrs
My mom Knows...I lick candy
A Promise for my mom...I love her
Next I have one more thing to share...
it's a bit sad ( I cried, no surprise I know!) but really good and comforting to hear.
I am talking about the mother's day sermon I heard yesterday.
I highly, highly, highly recommend you taking the time to watch if you have lost a child, have a sick child, or know someone in your life who is going through pain and suffering today.
For me...
I know God wanted me to hear this sermon. I had every reason not to go to church Sunday. Hunter had a friend spend the night, and mainly I had no one to stay home with Hudson, and I have not gone to church bringing Hudson in months(since Sept), because of germs...but I packed him up, and the boys and we went to church. I sat far away from people and faced Hudson toward me and the wall with the canopy enclosing him...he was a quiet perfect angel, with the exception of one cry-out tonic seizure toward the end.
I felt moved by what I heard and I knew the holy spirit nudged me to go yesterday.
For starters....
last Friday I had his transition meeting with the school district. His transition from the birth to 3 program ending and starting "preschool" I put it in quotes, because for a child like Hudson putting him in school is a joke.
It would be like putting a newborn baby plop in the center of a bunch of 3 year old's and expect him to gain something...why would you? I can tell you he would only gain many visits to the E.R. with the slew of germs floating around. I had heard and imagined I would have to fight for Hudson's rights....to get him the specific and only type of "schooling" that would be appropriate for him...home based therapy. I am happy to say that in this period of preparing for all of this to go down I never had to "fight" for what I wanted for him.
All this to say, he qualifies for everything (duh!) as I heard them tell me he is at 0-3 months in all areas.
I don't really let this bother me too much, and it wasn't shocking or a tear jerking moment for me to be among all these school therapists and hear this about Hudson. Some of them did an evaluation before our meeting, some just asked me questions over the phone, some was my first meet and greet.
They all know he is riddled with seizures and meds...they are familiar with the mask her wears...I also hold on to knowing this mask could be lifted, development could kick in...today, not so much.
So...on comes a new team....we get...
*speech
*ot
*pt
*vision
*preschool teacher
(Hudson also qualified for ESY...extended school year, for summer months)
they will piggy back, all coming once a week for about an hour, on M, T, Fri.
Hudson will also keep his current O.T. from the Elks on Wed. and clinic P.T. on Mon.
A fact in all of this from the school...
out of 1,200 special ed students, Hudson is the only one receiving home based therapy! Aren't we special?
Again...glad I didn't have to fight for this, glad they understand the need...
I would hope they would though....Hudson's neuro did write a letter stating it could be life threatening for Hudson to be in a school setting....don't think they get many of those letters.
So lots of change headed our way for our little guy...
and I am bracing myself and ready...praying I like all these new faces that will be walking through our doors!
Today we had a appointment with Dr. Carter...pulmonary. Hudson was actually under his care during our last admit in March, so it was good to see him today. First thing he said is that Hudson looks really good...so much better! He wants Hudson off the augmentin, which will happen tomorrow, and continue the nasal mist antibiotic at least through the summer. He wants to try the med again for the secretions now that the infection is gone. Hudson's secretions have been bad...just lots of salivary drooling when upright. He never had this problem before, but, like Dr. Carter said, so much play into the changes we see in Hudson. Changes in seizures, increase and various med changes, the disease itself and the effects on his muscles...
I really like Dr. Carter. I told him about our family situation, and wanting to take Hudson to Nevada for 4-6 weeks and asked him his opinion. His thoughts were if Hudson appears as he does today, he didn't see a problem with him going. He said he would be readily available by phone as should Dr. Saneto, if anything arises, and we could always fly him home...worst case scenario, if need be. He gave me script for Augmentin, the pill form, which has a 1 year shelf life. He told me to fill it, and take it to Vegas with me in case Hudson comes down with anything, or if the color of his mucous changes, etc. He felt that would be a good measure of comfort and defense knowing I have that to give him, not having to seek a dr. out....I was very happy he did this for me. It does make me feel better, and makes me think I may actually be able to take Hudson and the kids in July....I actually felt smile-e after the appointment!
I mentioned last week a certain someone's birthday was coming up...yup, Hudson will be 3 Friday.
I don't want to get into this too much, other than to say his birthday's have been very hard on me. I usually put the happy, celebratory face on, while I am cringing and crying inside, wishing all would leave the "party" so I can just sit and have my cry fest. This year I am really trying to focus on the fact that there really is much to celebrate. That Hudson, in spite of swine flu, and a whole bunch of other infections and cold, and 3 very recent E.R.hospital stays...he is here, and he fights like no kid I have ever seen fight...and he is such an amazing kid with super-duper strength that comes only from God...my focus is not about him turning 3, my focus will be that I and those who are blessed to know him, can celebrate all his three years has given and has taught so many. What a gift his 3 years has been...each day is such a gift, I don't want to waste my time being sad over what is not his, I will choose to focus on all that he gives, all that pours out from such a tiny body.
STANDER UPDATE....
I have been doing my homework, getting Hudson up and guess what????
Tonight NO CRYING!!!! He was up for 5 min. without tears or seizures! Pretty cool. He did start to fuss a little and I am pretty sure whaling was next but I got him out before it could happen.
One crazy thing....5 minutes in the stander and I take him out and both his legs and feet quiver....
muscle fatigue in 5 minutes!
Another Hudson happening....
This may sound horrible to some, but for me I have to share what gift my mom is giving Hudson for his birthday, because I find a huge amount of relief in it.
My mom asked if she could do Hudson's birthday party as her gift for him. I know as his mom, I should want to plan and throw it just like I do for my other 2, year after year...and maybe I feel a bit guilty because I am not planning it...BUT...when she offered, I felt a huge sense of relief. I have so much on my plate, I just didn't know if I had it in me to plan a party...and yet Hudson totally deserves the grandest party ever...I think it is an amazing and wonderful gift for Hudson and for me! :)
I have no clue what she is making or doing, but I know it will be perfect...mainly family, some friends, and possibly 2 very special current therapists that hold dear to our hearts...it will be a special day indeed!
That's the latest in Hudson's world.
One sorta funny from the world of Hailey....
she made this at church...a poster type thing on MOM...where she filled in the blanks (I will type as she spelled)...
My Mom is....loveing
My Mom loves...me
My mom's favorite...kids
My mom needs...cloth
My mom wants...no more segrs
My mom Knows...I lick candy
A Promise for my mom...I love her
Next I have one more thing to share...
it's a bit sad ( I cried, no surprise I know!) but really good and comforting to hear.
I am talking about the mother's day sermon I heard yesterday.
I highly, highly, highly recommend you taking the time to watch if you have lost a child, have a sick child, or know someone in your life who is going through pain and suffering today.
For me...
I know God wanted me to hear this sermon. I had every reason not to go to church Sunday. Hunter had a friend spend the night, and mainly I had no one to stay home with Hudson, and I have not gone to church bringing Hudson in months(since Sept), because of germs...but I packed him up, and the boys and we went to church. I sat far away from people and faced Hudson toward me and the wall with the canopy enclosing him...he was a quiet perfect angel, with the exception of one cry-out tonic seizure toward the end.
I felt moved by what I heard and I knew the holy spirit nudged me to go yesterday.
Sunday, May 9, 2010
not quite the tradition...
It's the first time since I have become a mother, that Paul is not here.
In short, we have a simple tradition....
I SLEEP IN!!!
followed by breakfast in bed served by hubby and 21/2 little monkey's...
followed by cards and little gifts...
followed by hugs and kisses and ...
relishing the fact that I get a "day off!"
No...
it's not quite the traditional mother's day in my home this year...
I was woken at 6:20 a.m. by two 8 year old boys (Hunter had his best friend over night)
playing Rock Band on the Will....
followed by our 13 year old black lab barking to let me know she needs to go potty...
she rarely does this, but at 13 (91 people years) if she is telling me she needs out...I haul myself downstairs to let her out.
(I have to add...my little angel is the only one who has slept peacefully, and never woke me up...love that little guy!)
Back upstairs I go...shutting the boys doors, shutting my door, hoping to catch some zzzzz's when the boys come in my room asking me for a Visa so they can buy something on the Wii online...
NO WAY....clearly, they don't have the understanding of credit...cuz then they asked me for the "numbers" instead of the card...like there is a difference! Oy Vay!!!!!
By 8 a.m. I am downstairs making my own coffee...Paul and I were going to drink coffee together via skype but he couldn't get online, so I am drinking my coffee alone...after throwing the boys a bowl of cereal.
Paul was a little disappointed....I think he envisioned dictating how to make "breakfast in bed" to Hunter and Hailey via skype and part of our tradition would be upheld. When he found out Hailey wasn't here, he couldn't get online, and my morning wasn't exactly the slumbering type...he sounded sad...for me.
I am really o.k.
Just another Sunday...being a mom...ya know?
All I want to do is go to church this morning. Get some good food for my soul.
We had a fun night at my friends for dinner...
she set a beautiful Mother's day table and we had dinner and talked.
My mom came too, so it was fun...we gals can sit at a table and talk and talk...that is what we do best! :)
She made me a beautiful prayer journal...I have never had one, but I am anxious to use one...especially for my online families and their prayer requests...sometimes it is easy to forget specific requests, names, etc.
A special gift...thanks Val.
So for this mom...
Church it is...
then I think I will go "hang" with my mom and my guess...
we will get a good movie and crawl into bed and let the kids fend for themselves! (Fred is over so they won't really be on their own!)
To all you super moms out there...
Have a beautiful day with your families....
I love, respect, and admire each and every one of you!
In short, we have a simple tradition....
I SLEEP IN!!!
followed by breakfast in bed served by hubby and 21/2 little monkey's...
followed by cards and little gifts...
followed by hugs and kisses and ...
relishing the fact that I get a "day off!"
No...
it's not quite the traditional mother's day in my home this year...
I was woken at 6:20 a.m. by two 8 year old boys (Hunter had his best friend over night)
playing Rock Band on the Will....
followed by our 13 year old black lab barking to let me know she needs to go potty...
she rarely does this, but at 13 (91 people years) if she is telling me she needs out...I haul myself downstairs to let her out.
(I have to add...my little angel is the only one who has slept peacefully, and never woke me up...love that little guy!)
Back upstairs I go...shutting the boys doors, shutting my door, hoping to catch some zzzzz's when the boys come in my room asking me for a Visa so they can buy something on the Wii online...
NO WAY....clearly, they don't have the understanding of credit...cuz then they asked me for the "numbers" instead of the card...like there is a difference! Oy Vay!!!!!
By 8 a.m. I am downstairs making my own coffee...Paul and I were going to drink coffee together via skype but he couldn't get online, so I am drinking my coffee alone...after throwing the boys a bowl of cereal.
Paul was a little disappointed....I think he envisioned dictating how to make "breakfast in bed" to Hunter and Hailey via skype and part of our tradition would be upheld. When he found out Hailey wasn't here, he couldn't get online, and my morning wasn't exactly the slumbering type...he sounded sad...for me.
I am really o.k.
Just another Sunday...being a mom...ya know?
All I want to do is go to church this morning. Get some good food for my soul.
We had a fun night at my friends for dinner...
she set a beautiful Mother's day table and we had dinner and talked.
My mom came too, so it was fun...we gals can sit at a table and talk and talk...that is what we do best! :)
She made me a beautiful prayer journal...I have never had one, but I am anxious to use one...especially for my online families and their prayer requests...sometimes it is easy to forget specific requests, names, etc.
A special gift...thanks Val.
So for this mom...
Church it is...
then I think I will go "hang" with my mom and my guess...
we will get a good movie and crawl into bed and let the kids fend for themselves! (Fred is over so they won't really be on their own!)
To all you super moms out there...
Have a beautiful day with your families....
I love, respect, and admire each and every one of you!
LOVE YOU MOM!
Thursday, May 6, 2010
The reality of not sitting...crawling...walking
It hit me hard this week.
I never really thought about the mechanics of our bodies until Hudson came along...
how the road of physical development for a child happens so perfectly,
in such great timing...
I have been hearing lately of Hudson's hip being tight...primarily his right.
He favors his right side over his left.
His O.T. is the one who I have been hearing this alot from lately.
I have also noticed his big toe doing weird things.
It is as if he is curling it up and it is bent.
So of course, I ask his P.T. about this and his hip on Monday's visit.
He agrees, the hip feels a little tight. He explains how as babies develop and and start pulling up and walking how the hip socket goes from being more flat as a new born to cupping the hip bone as it forms into the socket.
All makes sense.
This is why Hudson has a stander. This will help get that process going in spite of him not doing it on his own.
There is really no down side of putting Hudson in the stander.
It is good for his....
bones, digestive system, spine, secretions, his body awareness in space.
It will help with that big toe issue.
He is over using the muscle on top of his toe and not using the muscle on the bottom side of toe.
Standing and putting pressure on the foot, forces him to use those muscles. The toe flattens.
If Hudson's posture isn't straight as possible...in his chairs, stander, car seat, etc. it can cause his spine to curve, which can cause scoliosis. Scoliosis, if severe enough, can cause organs in the body to not have enough room, causing other health issues.
It is the snowball effect....and it scares me.
If the ball of the hip doesn't fit into the socket then their will be hip displacement.
If the muscles of the foot aren't developed there will be foot deformities.
If the spine and posture aren't aligned, there will be scoliosis.
All of these things would concretely prevent him from ever being able to stand one day or walk.
So many things I took for granted, never even thought about as my other 2 kids were babies.
I never realized Hudson's illness could create more than the laundry list of issues that we deal with already.
The things above are really big issues...ones I don't want Hudson to have to deal with on top of everything else he goes through.
The problem is.....
do you remember the video I shared when we put Hudson in his stander?
That is a classic example of how he gets every time we attempt it.
He fights, and expends so much energy, because he is so mad, that he usually ends up having a ugly tonic seizure. Then sleeps.
If Hudson had his way...he would never have to "work" on sitting, standing, playing....he would just snuggle and be held all day...that is what makes him happy.
I haven't pushed the stander because of all the colds and hospitalizations he has endured the past few months...I just don't want to put him through any more than he already has to endure! I don't want to fatigue him, and throw him into another seizure for the day!
I realize....
I must...because the above mentioned is equally bad, and I don't want him to endure his load today plus that.
I realize part of his intolerance to the stander is due to the fact that I am thin-skinned, and hate to hear him cry and hate to be the one to cause him more angst. I too would rather cuddle him and hear him purr like a kitty. It makes us both happy....today.
But we need to think about tomorrow.
and so....
I have vowed I will put him in the stander once every day for a month.
Right now he only last about 3 minutes, and that is with screaming....
because the screaming and fighting starts the minute I put the orthodics on...
he knows whats coming...
but I want to see if in a months time if that 3 minutes can turn into 6 minutes...
maybe his tolerance will grow if it is a part of the daily routine.
I don't want to be the cause of him developing any of the mentioned deformities....
it's that thing called guilt....
cuz I also don't want to be the cause of fatigue and seizures either.
Such a fine line we teeter-totter on....
I never really thought about the mechanics of our bodies until Hudson came along...
how the road of physical development for a child happens so perfectly,
in such great timing...
I have been hearing lately of Hudson's hip being tight...primarily his right.
He favors his right side over his left.
His O.T. is the one who I have been hearing this alot from lately.
I have also noticed his big toe doing weird things.
It is as if he is curling it up and it is bent.
So of course, I ask his P.T. about this and his hip on Monday's visit.
He agrees, the hip feels a little tight. He explains how as babies develop and and start pulling up and walking how the hip socket goes from being more flat as a new born to cupping the hip bone as it forms into the socket.
All makes sense.
This is why Hudson has a stander. This will help get that process going in spite of him not doing it on his own.
There is really no down side of putting Hudson in the stander.
It is good for his....
bones, digestive system, spine, secretions, his body awareness in space.
It will help with that big toe issue.
He is over using the muscle on top of his toe and not using the muscle on the bottom side of toe.
Standing and putting pressure on the foot, forces him to use those muscles. The toe flattens.
If Hudson's posture isn't straight as possible...in his chairs, stander, car seat, etc. it can cause his spine to curve, which can cause scoliosis. Scoliosis, if severe enough, can cause organs in the body to not have enough room, causing other health issues.
It is the snowball effect....and it scares me.
If the ball of the hip doesn't fit into the socket then their will be hip displacement.
If the muscles of the foot aren't developed there will be foot deformities.
If the spine and posture aren't aligned, there will be scoliosis.
All of these things would concretely prevent him from ever being able to stand one day or walk.
So many things I took for granted, never even thought about as my other 2 kids were babies.
I never realized Hudson's illness could create more than the laundry list of issues that we deal with already.
The things above are really big issues...ones I don't want Hudson to have to deal with on top of everything else he goes through.
The problem is.....
do you remember the video I shared when we put Hudson in his stander?
That is a classic example of how he gets every time we attempt it.
He fights, and expends so much energy, because he is so mad, that he usually ends up having a ugly tonic seizure. Then sleeps.
If Hudson had his way...he would never have to "work" on sitting, standing, playing....he would just snuggle and be held all day...that is what makes him happy.
I haven't pushed the stander because of all the colds and hospitalizations he has endured the past few months...I just don't want to put him through any more than he already has to endure! I don't want to fatigue him, and throw him into another seizure for the day!
I realize....
I must...because the above mentioned is equally bad, and I don't want him to endure his load today plus that.
I realize part of his intolerance to the stander is due to the fact that I am thin-skinned, and hate to hear him cry and hate to be the one to cause him more angst. I too would rather cuddle him and hear him purr like a kitty. It makes us both happy....today.
But we need to think about tomorrow.
and so....
I have vowed I will put him in the stander once every day for a month.
Right now he only last about 3 minutes, and that is with screaming....
because the screaming and fighting starts the minute I put the orthodics on...
he knows whats coming...
but I want to see if in a months time if that 3 minutes can turn into 6 minutes...
maybe his tolerance will grow if it is a part of the daily routine.
I don't want to be the cause of him developing any of the mentioned deformities....
it's that thing called guilt....
cuz I also don't want to be the cause of fatigue and seizures either.
Such a fine line we teeter-totter on....
Sunday, May 2, 2010
timing is everything...
seems that was the motto to our weekend.
Timing was amazing, like I said, for him getting out here on Thursday.
Since his plane got in at 6, we went to my moms for a wonderful dinner.
Hailey got much needed daddy time on Friday. I had to work from 9-12, so the 2 smallest H's stayed home with dad. Hunter was a bit jealous, but such is life when you are in 2nd grade!
Timing couldn't be worse when I felt a cold coming on Thursday night. Friday felt it a bit more, by Saturday my head felt like a bowling ball. Stuffy nose, little cough, eyes burn. Blah!
Tried to be "perky" so Paul wouldn't know, but you can clearly hear it in my voice.
I cooked for him, and made everything I promised.
He went back loaded with roast, carrots, chicken enchilda's and a breakfast casserole I made this morning.
Paul doesn't travel with clothes, just a backpack full of homemade food! Hope it lasts a while.
So I have a cold, plus that cramp-y feeling, and simply just not feeling good...at all!
Paul's head was heavy and full too...not because of illness, but because work-happenings.
I hate that work steals my husband and my kids father from us...but it does.
He is such a hard worker and a wonderful provider. He is very dedicated, which is probably why he is successful. He has a hard time separating work and personal life and I think it is worse now that most of his time is focused on work. So because some things were weighing heavy with him on the work side of things, it made him a bit less "present." He was aware of this...we talked about it...hopefully next time this won't happen.
I did get a small "honey-do" list checked off....
or I should say hubby got it checked off...
plugged bathtub
shower door not closing
microwave light/ night light replaced
video cam for the computer installed
Nevertheless, always great to have our family weekends, no matter which way they come. It's not always gonna be picture perfect, I am one that has a pretty good grip on reality...perfection is not one of my expectations...life can get in the way. Did make us both realize how much we enjoyed our "alone" time together, which we obviously didn't really have, but as much as we love the kids and need family time, we also need alone time. Hopefully this summer we can makeup for both of those things.
We had to head out earlier that expected today...flights didn't look so good this morning.
It was a quiet ride...sadness sets in...I hate goodbye's. Paul was pretty teared/choked up once we got to the airport. I t was a quick goodbye, he was late, and I don't think he wanted the kids to realize he was choking tears back. They were oblivious, as they played their DS's.
Before getting on my blog, we did skype for the first time. The kids thought it was super cool to see Daddy and I think it will help a lot. Again Paul and I were the ones crying as we said goodbye...kids were fine!
As got ready to X each other off the computer screen, Paul said he thought that as time went on things would get easier, instead they are getting harder....I clicked him off and Hunter said bewildered, "are you crying?"
and I said yeah...and then I got two of the biggest squeezes around my neck. All I could think, was there is nobody to give Paul a hug right now...and it made my heart hurt a little more. I am certainly the lucky one. I may be busy, and tired, and cranky (some of the time) trying to keep up with all the demands by myself BUT at the end of the day I have 3 little monkey's that in each of their own quirky ways...makes the craziness and sadness of our lives alot better. They make me forget, they help mend, they keep me busy, they make me laugh, and they fill my life.
So this cold, and mother natures call, and Paul's work woes couldn't have come at a worse time...
BUT we continue to realize the value of our family, what we have, and how blessed we are in spite of it all.
**please say a little prayer that Hudson doesn't catch this cold...hoping I somehow caught it from him**
Timing was amazing, like I said, for him getting out here on Thursday.
Since his plane got in at 6, we went to my moms for a wonderful dinner.
Hailey got much needed daddy time on Friday. I had to work from 9-12, so the 2 smallest H's stayed home with dad. Hunter was a bit jealous, but such is life when you are in 2nd grade!
Timing couldn't be worse when I felt a cold coming on Thursday night. Friday felt it a bit more, by Saturday my head felt like a bowling ball. Stuffy nose, little cough, eyes burn. Blah!
Tried to be "perky" so Paul wouldn't know, but you can clearly hear it in my voice.
I cooked for him, and made everything I promised.
He went back loaded with roast, carrots, chicken enchilda's and a breakfast casserole I made this morning.
Paul doesn't travel with clothes, just a backpack full of homemade food! Hope it lasts a while.
So I have a cold, plus that cramp-y feeling, and simply just not feeling good...at all!
Paul's head was heavy and full too...not because of illness, but because work-happenings.
I hate that work steals my husband and my kids father from us...but it does.
He is such a hard worker and a wonderful provider. He is very dedicated, which is probably why he is successful. He has a hard time separating work and personal life and I think it is worse now that most of his time is focused on work. So because some things were weighing heavy with him on the work side of things, it made him a bit less "present." He was aware of this...we talked about it...hopefully next time this won't happen.
I did get a small "honey-do" list checked off....
or I should say hubby got it checked off...
plugged bathtub
shower door not closing
microwave light/ night light replaced
video cam for the computer installed
Nevertheless, always great to have our family weekends, no matter which way they come. It's not always gonna be picture perfect, I am one that has a pretty good grip on reality...perfection is not one of my expectations...life can get in the way. Did make us both realize how much we enjoyed our "alone" time together, which we obviously didn't really have, but as much as we love the kids and need family time, we also need alone time. Hopefully this summer we can makeup for both of those things.
We had to head out earlier that expected today...flights didn't look so good this morning.
It was a quiet ride...sadness sets in...I hate goodbye's. Paul was pretty teared/choked up once we got to the airport. I t was a quick goodbye, he was late, and I don't think he wanted the kids to realize he was choking tears back. They were oblivious, as they played their DS's.
Before getting on my blog, we did skype for the first time. The kids thought it was super cool to see Daddy and I think it will help a lot. Again Paul and I were the ones crying as we said goodbye...kids were fine!
As got ready to X each other off the computer screen, Paul said he thought that as time went on things would get easier, instead they are getting harder....I clicked him off and Hunter said bewildered, "are you crying?"
and I said yeah...and then I got two of the biggest squeezes around my neck. All I could think, was there is nobody to give Paul a hug right now...and it made my heart hurt a little more. I am certainly the lucky one. I may be busy, and tired, and cranky (some of the time) trying to keep up with all the demands by myself BUT at the end of the day I have 3 little monkey's that in each of their own quirky ways...makes the craziness and sadness of our lives alot better. They make me forget, they help mend, they keep me busy, they make me laugh, and they fill my life.
So this cold, and mother natures call, and Paul's work woes couldn't have come at a worse time...
BUT we continue to realize the value of our family, what we have, and how blessed we are in spite of it all.
**please say a little prayer that Hudson doesn't catch this cold...hoping I somehow caught it from him**
Subscribe to:
Posts (Atom)
Hudson Tyler
Our sweet angel!