Monday, December 28, 2009

Who killed Jolly Jo-Jo?

The Crawfords hosted our annual Christmas Bunko this year and as always they are the most creative host/hostesses. This year instead of the traditional Christmas party, we had a Murder Mystery party with all the props including our "tacky" attire! Sorry to disappoint, but this is not our usual attire! If you are stumped for an idea to add some fun to a usual get together, I highly recommend it. We had the BEST time!

Anna, Brandy, Priscilla, and Helen

All the ladies with our most favorite Christmas sweaters!

All of the guys, we had a few good sports that joined in on the tackiness, including the winner--Stanton (farthest to the right)!!

This is me and one of my bestest friends Lyndi! I can't wait to show my Mamaw this picture because we are both in sweaters that she let me borrow. i can already hear her asking me, "Did everyone like your outfits, darling?" She gladly let me borrow them, I don't think she quite understood why!!

I know these arent from Christmas!

But I know I havent put any pictures up in awhile so these will have to do for the moment!

Kinson walks in the door and he automatically takes off his shoes and pants....not sure why but he feels this need!

Ok, the remark has been made that Cohen needs a haircut, but I REFUSE! I want her hair to grow out so right now we are at this "in between stage"! She has enough hair for pigtails but that little girl won't have any part of it. Well I guess we just start wearing hats!

Sunday, December 6, 2009

An email from our Neurologist

I could type it all out but I decided to just copy and paste part of my exact email :

From Dr Bruce

"I have good news....Cohen's EEG was normal. I am happy for 2 reasons....#1there was no sharp or spike waves that would indicate seizure activity. Secndly, her brain activity is not slow--which can be seen with children who have any degree of mental retardation."

PRAISE GOD!!!! I can handle all these test as long as we get results like this!! I am sorry I didnt post on Thursday when we found out but I have been on the phone fighting with First Steps and it has been soooooo frustrating. Thank goodness January is coming soon and we will be able to start Cohen in whatever therapy services we choose and let our insurance pay for it (at least for the first 25 visits).

Saturday, November 28, 2009

Drs, specialist, therapists, O My!!

Cohen has had a battery of tests run and continues to see one dr after another. We did get the official MRI report that showed that the development of the structure of the brain was completely normal!!! It was an answered prayer!
She was evaluated officially by First Steps at the end of Oct-- she is on a verbal level of a 3month old and on the physical level of an 8-10month old. She qualified for 1x/wk Special Instruction and 2x/month Speech Therapy for oral motor to assist with controling her tongue. Like I said that was October and here it is Dec on Tuesday and we haven't begun her therapy yet---this has been very FRUSTRATING to say the least.
We saw a Neurologist at Batson on Wednesday and she was TERRIFIC!!! We can not express how truly blessed we are to have found such great drs so close! She spent a ton of time with us and sat down on the floor in the room and played and loved on Cohen, we could really tell that she cared about her and ensuring she gets proper care. The other thing that I really liked about her, is that she did not "hide" her concern. She was very upfront with me on the reality of Cohen's prognosis-- which is still undetermined at this time. She scheduled us an EEG on Wednesday at Batson to study the brain activity and rule out seizure activity. We have never seen anything resembling a seizure go on in Cohen, but she said some can be so mild that they are not detected. Also, the MRI can not show the actual connections of fibers and firing going on so this will continue to help with the diagnosis. She did say that if everything turns out normal, then she says any damage done so far is very likely reversible. Babies brains are so plyable and still forming that through therapy and time, hopefully things will catch up. She was a HUGE advocate for therapy and was very disappointed to hear that it has taken us so long to start First Steps and gave us a few alternate routes to think about to get more services.
Cohen is just stealing our hearts daily as she smiles and grins at us! She is taking a few steps everyday-- she is dying to start running after her brother-- she eats us out of house and home, she is wearing 6 months clothes, we moved up to a size 3 diaper but they are HUGE on her, we think we are going to have to go back to a size 2 for daytime when she is moving and use the 3s at night, she loves her sleep 12+hrs a night!! She loves every man that comes near her (not sure what this will mean as she gets older)!!! She is truly a little fighter!!

Has it really been a month?!

I have never gone this long without updating the blog, but work and life have gotten the best of me!
Here are a few latest updates:

  • We celebrated Cohen's first birthday (pics to follow)! She never got to have her party because she ended up with strep throat the weekend it was planned....the story of her life :(
  • They celebrated Halloween. Kinson still didnt quite get it--he kept telling people "thats enough" when they were giving him candy! This was the weekend Cohen had strep so she didnt get to partake :(
  • Our favorite family from Virginia came to visit us! We miss them so much and usually only get to see them for a week during the summer, so we were so excited that they got to come down. We are planning for us to head up there in June for Stefani's graduation-- can't decide if we should drive or fly with the 2 kids???
  • Cohen has had multiple dr visits and I will do a separate post to update and get my prayer warriors ready!
  • Bear has been diligently studying, we couldnt be more proud of him! He has past the 2 hardest sections of the CPA test and took another part Nov 24. We will be anxiously awaiting his scores as he studies for the last part on Jan 12. He has continued to persevere through his fatigue and stress at work-- he has worked soooo hard for this!

I hope that the Holidays have brought many blessing and good times! I am hoping to get my pictures uploaded and added soon!

Saturday, October 17, 2009

Sibling Rivalry.....

Don't be fooled.....this doesn't happen very often!

Deja Vu

I don't have Kinson's baby pictures on the computer anymore but you can look at my old post from Oct/Nov 2007 and see this same act taking place! The only difference is that Kinson discovered the doggy door at 8 months old and at least Cohen held off til she was almost a year!

Here she is putting blocks outside! By time I figured it out she had already gotten 9 blocks and 2 hotwheels outside!

So Sorry for the late update!

I can't believe that I haven't updated about Cohen's MRI yet, but we are really frustrated right now! Cohen did better than expected with the actual procedure, she made it until the procedure started at 9:30 without eating! It took 5 sticks before they were able to get the IV started and after she screamed that much she went fast to sleep! They came and took her from us and it took about an hour and then she was in recovery. I was expecting her to be like she was after the tubes (screaming uncontrollably!) but she was very groggy and disoriented. They said she was in a twilight. It was really short lived and then she just cat napped all day.
As far as the results, that has been the frustrating part. We had the MRI done at UMC but our endo has a private practice therefore he has to request the results. Well we love our dr, however his office staff leaves a lot to be desired. So i called them on Monday to let them know the results were ready but they had to call and get them. They said fine, well on Wednesday they call Bear and ask if she went and her MRI they hadnt received the results yet!! He told them they had to call and get them. Friday came and we still havent heard anything, so Bear called UMC on Friday and gave them our dr's number for them to fax it to them! They arent open on Friday afternoons so we werent able to call and verify they received it. The latest we could hear anything is the 30th, we actually have an appt that we wait :(
And a new appt to add to the list--Neuro Nov 25th.

Sunday, October 4, 2009

She loves Spaghetti!!

She has just started on table food over the last 3 weeks and she LOVES everything we put in front of her (except bananas)! This was her first try at spaghetti and just like her big brother, she devoured it!

Wednesday, September 30, 2009

Genetisist Visit

This morning we met with Dr Omar at Batson Specialty Clinic. He and his staff were sooo thorough! They asked a lot of history questions and examined her looking for anything that might stand out or remind them of another patient. The genetisist will determine whether or not she has a "syndrome" or genetic disorder. GOOD NEWS--He did not see any signs of any "syndrome" at this time!! But he feels as though she is still a complicated case of hypothyroidism. Both he and our endo believe that she was born this way even though she passed her newborn screening TSH Level. Both feel that the test was either performed too early for it to show up or the during the testing process there was an error. They feel with my autoimmune hypo-T that was not regulated during my pregnancy actually might have a lot to do with the malformation of her thyroid. So now we are pretty certain she went the first 6 months of her life with a critically high TSH level.

We are going to continue with our current plan, MRI next Friday (Oct 9), follow up with endo (Oct21), but we have added a few new things. She will be evaluated for First Steps on Tuesday to see what therapy services she will qualify for, and we are also going to see a Neurologist to determine what if any damage was done to her brain during the period when she had excess of TSH in her system. She will hopefully be able to assist with knowing more long term effects.

And for those who have been following her saga, we finally have a diagnosis for her chronic ear infections! She had streptoccocus and h influenza strand A harboring in her ear---YUCK i know! The bad part is that there are no FDA approved meds approved for a child her age. So we are now seeing the ENT for thorough cleanings (It is nasty!!!) and some antibiotics to hope the bacteria doesnt spread.

I know that this was kind of a boring post but I have had so many phone calls and emails letting us know that they are praying for Cohen and us and it means sooo much to me. This was the most efficient way to relay what is going on so far. Again, it really means so much to me all the kind words and prayers that have been sent our way. I will keep everyone posted as more things unfold!

I havent taken all my recent pics off my camera but i felt like if you made it through this post, you at least deserved a picture!

Sunday, September 20, 2009

She's on the move!

I have talked about her new skills of mobility but i figured I would give yall a sneak peek! And I need to give a quick update/praise--- the genetisist appt has been moved to SEPT 30th!! That is just next week! We went and had some tests run last week that the endo called and told us to go and get run, not sure if we will get the results at the genetisist appt or if they will call and give me the results. We are not really sure what the tests were, the lab sheet were for a lot of stuff I had never heard of, so we will just wait and see. We also started the process for "First Steps", it is Mississippi's Early Intervention services. The dr has recommended she start speech therapy again but this time for actual verbal skills. So hopefully this week she will get evaluated. Until next time....

Tuesday, September 15, 2009

Monday, September 14, 2009

To post, or not to post.....

See this cute little being right there? It is so hard for me to imagine that she isn't the most perfect creation ever (besides her brother :)). I have been avoiding my blog lately because I have only had her on my mind and I wasn't sure if I was ready to put it out there yet. I debated keeping this to ourselves, because we feel as though this is our never ending saga of illnesses, but I knew there were too many people out there who have traveled this winding road with us and our children and the more help and prayers we could get, the better.

To make this as understandable as possible I will leave out a lot of medical terminology and details just so you can get the big picture. I have posted multiple times about Cohen's thyroid disorder and small size ever since she was diagnosed. We went for a regular check up with her endocrinologist last week to check her thyroid levels --which were great and have been regulated since MAY!-- and developmental milestones. She has gradually been gaining weight however she has not grown in length at all in 4 months (she is 25 in long). I always say she is small due to her hypo-T, however I was corrected by the dr who explained it very well to me. Cohen DOES have hypo-T BUT she is regulated, therefore she is just like any other baby out there. That is where the concern comes in....she has been regulated now for 4.5 months and has fallen farther off the growth curve, instead of gaining or at least maintaining. This combined with the verbal/speech delays are huge concerns as she approaches her first birthday next month. Dr Bastian feels as though the hypo-T might be secondary to something bigger going on.
So here is the plan of action-- Cohen will have a sedated MRI Oct 9 (rule out obvious malformations, tumors, etc), follow up with endo Oct 21 for results, and then meet with a genetisist Oct 30 to hopefully put all these pieces together.
I do not know what any of this means, I have tried to just be positive and know that they are being cautious. But I am constantly reminding myself to be thankful, I have so much to be thankful for. I am thankful that we have drs who listen and are proactive in Cohen's care. I am thankful that there is only 1 pediatric endocrinolgist in that area and Cohen was seen within 4 weeks and there is only 1 pediatric genetisist in the whole state and Cohen got an appt next month. I am thankful for listening to my gut and being persistent with Dr Flowers that Cohen's tongue wasn't normal, thankful he listened! Thankful for how far she has come!

If you made it this far, you deserve a gold star!! But I do want to end on a positive note and tell yall all her new tricks. She is cruising everywhere, on all the furniture, and has even attempted her push toys! Physically she is right on target. She learned one hard syllable--duh! This is HUGE!! She started sometime the week before last and it was very rare but lately it has become more frequent. Sunday morning I woke up to her "aahing/oohing" on the monitors, again this was a big deal because this is unprompted "speech" vs one of us stimulating her to talk. We know she is continuing to improve and we just can't get enough of that cute little girl!

Monday, August 31, 2009

Oh how time flies, when we are having fun!

Our vacation has come and passed. We went to a Portofino Resort and Spa off Pensacola Beach and it was fabulous! Don't let the name fool you, it is the most kid friendly resort--they have a kid "playground" in the water on the Gulf side and counselors that will do activities with them. We however did not par take in any of these luxuries, we just bummed on the beach. We knew because of Kinson's quirkiness and finicky behavior it was going to be hit-or-miss if he was going to like it or not. The first day was a no go, he got out there and really just played in the sand a bit, luckily it rained and we went shopping the rest of the day. The next day, Nana performed a MIRACLE and had that boy out in the waves!! He didnt get out for 2 days!!
There are so many stories and good times to share but I need to get the little one to bed but here is a few pics (there will be many more to come). And big shocker, there are a few pics of ME!! I had a friend ask why I had no pictures of myself up and I didnt have a good answer except that Bear still doesn't know how to work our camera so when he does take a picture it is not to good. Nana took these for us :)

Saturday, August 22, 2009

Only 2 more months

until our little girl is a year old!! This year has been so long, yet gone by so fast. We weren't scheduled for a 10 month check up but Cohen was having some ear trouble so she got one anyway. She is really having problems with her right ear, that was the one that caused her to need tubes, she had one ear infection that NEVER went away. We were hoping after tubes that this would help this situation, but it has helped to drain the infected fluid out, but however too slowly. She has had 2 ear infections (or 1 that just wont go away) this month, so she is on another round of antibiotics and if doesn't help then we will get some powder from Marty's Pharmacy that they compound to "puff" in her ears to hopefully kill eaverything. If not then back to Dr Lee to decide the next step. Her ears clearing up are so important to her and us as we try to eliminate all factors that might mask as a delay. Hypothyroid kids have a tendency to have speech delays and she is already delayed in her language skills we know but we would like to eliminate the factor that it could be because of hearing difficulty, so we hope that one of these solutions will help.
What else is Miss Cohen up to?
  • pulling up on EVERYTHING--don't stand still too long, she will pull up on your legs!!
  • attempting new textures of food-- she sort of gags easily
  • stealing all of Big Brother's toys
  • loving bathtime, if Kinson doesn't drowned her first!
  • sleeping 11+ hours a night, and she looks too cute in the morning to wake her up so we open the door and hope noises will wake her up
  • attempting our 6th or 7th sippy cup....this hasn't been going so well
  • wrapping herself around her Papa's finger! She didnt have to try to hard!!

Tuesday, August 11, 2009

Always learning something new!

Our little girl is on the move!! She is just continuously amzing us with her determination. She is now crawling everywhere and pulling up on everything. She looks so funny because she is the size of a 5 month old! However she is growing! We went for her 9 month check up---yes i know it was late-- but she is weighing a little over 15 lbs!! That means she has finally doubled her birth weight!!! This is especially important as she is so active and we anticipate her weight gain to slow down a bit. But she is just so darn cute, again I know I am very bias, but we really can't ger enough of her!!

Adventure Racing--Take 2!!

We were off again, this time to Baton Rouge! We had so much fun even though it was so hot! This time what made it so much more fun was that not only were we cheering on Bear's team but we were also cheering on my coworker, Helen's team, which was an all girl team. This race was the same as the last, running, biking, and canoeing, all bvased around a map and a list of checkpoints. It was such a close race......but the GIRLS won by 2 1/2 minutes!!
Between 2 kids, the campus, and each team on different routes, I had a difficult time taking pictures, so here are a few!

Monday, August 3, 2009

This might make the grandmothers proud....

My mother in law has been cleaning out her costumes that have accumulated over the years and needless to say, Cohen has such a large dress up collection (in size XS-18!!) that Cinderella and Snow White would be jealous!! So the other night we decided to see what her future holds!!

Tuesday, July 21, 2009

Tomorrow is the day

that I dread each year. I don't know how to explain how I feel when this day approaches each year. I can't believe that it has been 8 years since my accident, I would have never believed that my life would be where it is today. I dont have to be told how far I have come and the obstacles that I have overcome, that is my job to tell others so it is hard for me to understand this side of it. I still feel like adversity is something you accept and move on. The last few years have been relatively smooth as the day approaches and passes. I have always just tried to keep busy and but like I said the last few years it just hasnt "bothered" me. But this year has been different. This day has been in my mind for a few weeks now, however I had to look up the day because I couldn't remeber the exact date! But it happened on a Sunday so Sunday was exceptionally hard for me. It was as though i kept looking at the clock replaying what I did all day before/after. I wish I could put my finger on it this year, but I feel like i have been made aware of my arm more the last few months. Kinson has become aware that Momma is different and now that all the kids in his class are so vocal they are also very curious. Each day I have to explain that I am not "hurt" to them, just different. I also hurt my thumb a couple of weeks ago and it really scared me knowing that if something happened to my left hand I dont know what I would do. I know that this is just a bunch of rambles and probably makes no sense but it is sort of therapy for me. And it tends to be cheaper than my other therapy that usually consists of many stores and credit cards! However this weekend I did start my retail therapy and got a new rug, 2 chairs, and an ottoman for our living room but it is on order and wont arrive for 2-4 weeks so this will have to do in the meantime!

Where has this sweet boy gone?

This face looks so deceiving but inside that little boy there is a plan brewing. The plan consists of making everyday tasks as difficult as possible for his mama and papa!! I wish i could take pictures of our bedtime routine but we dont have one anymore. He moved to a toddler bed a few weeks ago and all since of routine has gone out the window with the crib. He hates to go to bed, kicks screams, and will make himself hyperventilate to get his way. He sleeps in his school shirt because he hates to change clothes and I hoose to fight that battle only once a day. We wake up early and sneak in his room and slide on his school shorts and if we are lucky we can change hisdiaper too before he realizes that he should be fighting us. The task might not be as bad except that Kinson feels the need to sleep in SHOES everynight! Dont ask us why but again we pick and choose our battles. If you can just imagine what he looks like at shirt, diaper, and red lighting mcqueen crocs!! I am going to try and get a picture.
Today though our little man had to go back to the dr with strep for the third time this year. Last year it was pneumonia and bronchitis and this year strep, I hate that he has to be sick but this year was much easier. But as bad as he is at home, he sure can charm the ladies. He was a complete angel with the nurses letting them weigh him, take temp, and even listen to his chest.....he normally goes ape crazy after his traumatic experiences. He did great until they checked his ears and he screamed and told the dr "You hurt my ears, make it feel better!" He is riding around with Bear hoping that at any moment he will fall asleep so we can forgo the kicking and screaming tonight in exchange for an early night that is sure to be shortened when he awakens feeling puny and crawling in our bed!

Time is going by sooo fast....

my little girl turned 9 months old Sunday!! She really is starting to grow up and be a "real" baby as me and Bear say. Yes we know she is a real baby, but she is finally beginning to do things that babies do. She started combat crawling last week and boy has she gotten fast. She will get up on all 4s but really likes squirming around on her tummy. She has the cutest, shy personality. She will look at strangers and smile and then bury her head in our chests acting bashful :) She definitely gets that from her papa!
She LOVES to eat right now, although not much from her bottle but she wants to feed herself. She loves her mum-mums and cheese crumbles. We havent tried too many table foods because I learned with Kinson, once they start eating tablefoods they hate babyfood. Well with her small size, I like to control that she eats a certain amount each day and anything over that is great. We wont get weighed again until Monday so I dont know exactly how much she weighs but at home it is between 14.5-15lbs.
Her verbalization has increased some, especially in the morning or during diaper changers. She usually has the best stories to tell us then! Still no real so called babbling but definite sounds on a regular basis now!
As far as her thyroid is going, we are still taking Synthroid each morning (this will be our routine indefinitely) and she will have bloodwork done again Monday to see if she is still within the range they would like. I know I always say how amazed we are each day as we watch her develop, but we truly are in awe of how strong she really is.

Sunday, July 5, 2009

Marshmellow Cream, who would have thought?

It could cause a HUGE meltdown?! Kinson "helped" me in the kitchen the other night, I gave him the marshmellow cream after I got out what I needed and let him go to town. He is so picky i never thought he would actually taste it. After one bite he was hooked! He loved it, but it was close to bedtime so I had to cut him off and he did not like it one bit. He threw a MAJOR fit.....these seem to be getting more and more common!

So innocent....

Just a short update on Cohen's progress. She is doing GREAT! She is waking us up each morning to some sweet sounds and we can't complain. She has started to ooh and aah a good bit and making some hard consonant sounds when she is good and awake. We found out that she tends to do better in the morning especially when well rested and full! She is holding her bottle now, which is big for us just for the sake of time because it still takes he about 20 minutes to finish a bottle. So now she can hang out in her bouncy seat each morning and take her time. Still no crawling but she can get to whatever she wants! She scoots and spins constantly. She will get to furniture and can get up on her knees and really wants to pull up, so we will see if she even crawls. Again we wont complain that she isnt quiet so mobile but definitely not delayed yet!
If you look at her you would think that she has grown 2 sizes but the scales still dont show it. She is hanging out around 14lbs 5oz and 24-25in long. These are both in the >1% growth percentile but all we can do is encourage food whenever she wants it. She had her first surgery a couple weeks ago, she got tubes. We opted for those for 2 reasons: 1: we thought it was affecting her hearing which in turn affected her speech and 2: it affected her ability to suck on the bottle because of the pain it was causing. We have seen a great improvement in both areas. She is a trooper with her medicine, she has to take a pill, yes you read that right A PILL, each morning and can't eat for at least 30 minutes. Well that wouldnt be too bad but she has to wait the 30 min and then take her Prevacid which would like her to wait another 30 min to eat! She really does well and tries to be patient.
She really is doing so well compared to where she started! We are so thankful and encouraged by her.

Happy Independence Day!

We live in the most kid-friendly neighborhood and each year they have a parade for every holiday. On the 4th of July the Pearl River Valley Fire Station is kind enough to lead the parade. And oh does kinson love a firetruck! However it seems as though the anticipation of it was actually more exciting than the actual firetruck itself. He could hear the sirens as it rode through the neighborhood and he kept saying "It's coming!" However when it actually got here he wasnt as excited. But he was a big fan of the beads!!

The Fourth Of July is one of my all time favorite holidays and I think it has to do with where I work and knowing so many men and women who have fought for our freedom. Their stories are amazing and it is a rminder to me each day that freedom is not something we should take for granted. Thank You!!!

Sunday, June 21, 2009

I can't believe she is 8 months old....

Our little girl is a little fighter these first 8 months. For her 8 month birthday she got GREAT news, she graduated from physical therapy for her neck!! That is right, no collar! She still is a little weak but has made great improvements over the last few weeks. We will miss Ms Kim, however we know that with her hypothyroidism and low tone we might have to have her services again (let's hope not).
She also saw the endocrinologist last week. After waiting 3 hours, we saw Dr Bastian and he was so helpful. He spent a good 45 minutes with me (now at least I knew why we waited 3 hours) explaining all her tests and examining her. He did show concern in her small size (14lbs 2 oz, 24.5in long) but also said at this time there isn't too much we can do. He was thrilled to see her TSH (thyroid stimulating hormone) level was within normal range, 1.4. She started at 8.9! He still has further testing to do to determine the specific type of hypoT she has but definitely leaning towards autoimmune hypoT. This is mostly due to my history with autoimmune disorders and my new diagnosis of hypoT. She goes back in July to continue with her testing and developmental evaluations.
What is Cohen doing these days besides being a Bathing Beauty?
  • sleeping from 7:30-6! (she might fuss around 2 for her paci, but otherwise we cant complain)
  • sitting up for hours it seems like
  • spinning in circles on her tummy
  • finally eating 1 jar of babyfood at one sitting
  • she LOVES mum-mums and puffs
  • makes a mess with a regular cup
  • attempting a sippy cup
  • LOVES her papa, she reaches for him no matter who is holding her
  • she started Big Girl school with Kinson and the first week got SPOILED ROTTEN, we had to talk to them about that!

She really has come a long way in a short period of time. We couldn't be more thankful for all of the support that we have had. We just look at her and are amazed!