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!

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 day..........so we wait :(
And a new appt to add to the list--Neuro Nov 25th.

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!

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!

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....

A few beach pics

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!

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 :)

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!!
  

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!

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!!