Empowering those with Special Needs through Cheer

Since entering the world of "special needs" I have learned that there is not much for these kiddos to take part in due to their conditions. While there are some programs offered for these children there, in my opinion, is still a gap in Tyler for activities for these amazing fighters. Therefore I have decided to take on an enormous challenge with the help of Gym Tyler Gymnastics. We are going to put together a special needs cheer team. There are many All-Star organizations who have already done this and have shown a huge success with community involvement. The main thing here is going to be generating enough donations to help these kiddos. While we can donate our time and services there are other costs associated with being on a cheer team that we would like to have donated so that these parents do not have to endure any more costs. A lot of these parents are already working two jobs to afford the medical bills and other things they have inquired. My main reason for writing this blog is to be able to generate some contacts in which we could use to help pay for the cost of their uniforms, shoes, competition fees, etc. We will be providing quality training along with their training facility. We will be keeping the cost of uniforms as low as possible but would like to be able to provide them with some kind of uniform so that they can have this memento to cherish.

Any information on how to generate some sponsorships for this dear project would be greatly appreciated. Also if you would like to help in any other way please let me know as well! Thanks for all your time and support!

Love,

Tara McHam

Teeth, teeth, & more teeth!

So this week Karter has not had any significant changes! Whoo Hoo!!! She is still strong and doing great! I do believe that she is starting to teeth! The crazy thing is she has two white bulbs where her eye teeth are in her mouth. I could of sworn that they get their middle front and bottom teeth first but hey Karter has not done anything by the books thus far I am assuming teething will be no different. Speaking of teeth, Addison Grace used her teeth in the most unappropriate fashion this week. Let me start at the beginning of this story and let you know that she had been begging me for "another" Popsicle. She had already had her one for the day so I told her no. She then continued to beg so I decided instead of popping her bottom I would just keep telling her no and then ignore the question. Upon figuring out what I was doing she decided to one up me and get my attention quickly. It started with a cry from Karter and then Addison saying, "baby Karter is hurt". I immediately turn my attention to Karter (this whole time I had been dusting in the room) and start to look her over to check for the source of pain. You must know that Karter never cries unless something is terribly wrong. Upon my examination I notice this nice set of teeth imprints on her left foot. Knowing that it could not have been Karter who bit herself I began to question Addison on why there might be teeth marks on her little sister. She then proceeds to tell me exactly how it is, much of which I could not understand and probably would not want to understand. After a small popping and some time out she decided it in her best interest to apologize to Karter for using her to drawl my attention back to her. She is such a goof ball! I can not wait till we are passed these TERRIBLE twos!!

New for us this week is Addison's new insomnia habit. She can not sleep for anything!!! I have tried everything!!! Jeannie did suggest a book that I will be consulting in the near future! Addison has not gone to bed before 1:00 am this week, well with the exception of tonight! Then she is waking up very early, taking a small nap during the day, playing hard, and still not tired at night. Hopefully this will pass soon!

So today we had our first big Holy Moly incident. When heading out of the house this afternoon I had both girls out the door and was beginning to take Karter and the tank down the stairs when BOOM! I was laid out at the bottom of our steps. Mind you it is only three steps down. Karter thankfully was in her carrier and landed right side up while the tank and I took the brute of the fall. My ankle tonight is very sore and minus a cut here and there I am okay too. The tank was also OK only chipping off some of the paint on the can. Addison immediately came down the steps to check things out and was more worried about my necklace (which has a magnetic connector) being thrown off of my neck. She kept asking if the necklace was OK. After getting over the initial shock and confirming that I had not broken my foot I picked everything back up and we got in the car. I am just so grateful that Karter was not hurt!!

Tonight I do ask that you send up prayers for a very special little warrior. Her name is Haven Grace and she received a new heart this past week. The Lord has been by her side the whole time and she is recovering beautifully! Praise the Lord for the wonderful work he does through our youngest troopers!

Much Love!

Tara McHam

P.S. Ear appointment for Karter is this coming Friday! I just pray that the Lord will see us through this next challenge as we prepare for the worst but hope for the best.

Cherish Today

Today we will paint

I promise not to faint!

Today we will pretend

Today we will rock

I promise not to go into shock

Today while you suck your thumb

I promise to never let my heart go numb

Today as you smile and hug

I promise not to become a big blub

Today as you thrive

I promise to never leave your side...

This week has been nothing short of A-M-A-Z-I-N-G! We received great news at the cardiologist! Karter's heart surgery is still a success. She is still going to be on oxygen for another few weeks and she still needs to gain weight at a faster rate BUT her heart is doing just great!!

Karter did have to get some shots this week and those caused her to have some fever and typical shot after effects but so far this has been a great week! Her PT & OT session this week went great! We missed two sessions (one because of the cardiologist appt. & another one because of her being sick from her shots) this week but at the one session she attended she did wonderful!

All in all Karter is finally able to be a normal baby for the most part! She is starting to show signs of her teeth coming in which is just crazy to me! It does not seem like she is four months already! Where did the time go??? Oh yea it went to Children's! Haha! :)

This week we had lots of fun! Addison painted a picture frame border with black paint and became covered from head to toe! It was lots of fun to watch her! We had some great company when Dustin & Philana came over! Parker and Addison each got a new guitar and played us lots of music throughout the evening! Parker even tried on Addison's pink earphones to play telephone operator! I am so glad that Addison has so many young friends her age that can come over and play. I still think she needs some outlets like these play dates in order for her to cope with our new routine of doctor appointments almost everyday. I am not going to know what to do with my time when we do not have to go all the time! I am sure I can find a good way to spend it though, especially with my girls & our recliner! Addison and Jeremy were also able to enjoy our slip-n-slide this week. I believe Jeremy got a huge workout for he slid her across the slippery slide about 100 times! She is starting to become daddy's little girl which kind of breaks my heart. I know she will always love me but I thought I might be able to fight off the inevitable daddy's little girl title. Guess not, at least I can try to with Karter!

Tonight as I am writing this I am going to ask for some prayers for an old friend of mine. She just had a precious baby with a heart defect and down syndrome. My heart breaks for her as I know how hard the beginning is to this journey. At the same time my heart is beaming with joy that she is going to be able to experience some of the most amazing things with her child. Please add them to your prayer list along with Karter.

God Bless & Love,

Tara McHam

P.S. This week tragedy struck an amazing family. This family is in my every thought and prayer as they endure one of life's hardest curve balls. May the Lord bring peace to the Ross family as they grieve a Father/Husband/Grandfather, and a Son/Grandson/Nephew. Nothing in this world will be able to ease their pain, but through the Lord's loving embrace may they find peace. Please forget about that load of laundry, the dirty kitchen, the lawn that needs mowing and spend some extra time with the ones you love.

A smile from my girls shows the Lord's true grace!

I am very happy to announce that Karter is now smiling A LOT more!! She was smiling quite a bit before her surgery but somehow lost it, but it is back! She is by no means smiling all the time but she is smiling a lot more everyday. God is awesome, a smile from my girls shows me this daily!

So we finally were able to get our test results back in to determine which type of Downs Syndrome Karter has been diagnosed with for medical intentions. If you missed our previous post there are basically two types, the famila and non-famila. The famila type can happen if one of the parents has some type of glitch in one of their chromosomes and leads to greater chances of having another child with this syndrome, while the non-famila type is basically just a complete random act. According to their test Karter has the non-famila kind, this to me just signifies God's great plan for us. We are one of the lowest chances and also one of the youngest couples to have a child with Downs syndrome. There is no medical rhyme or reason for it, it just happened.

It always shocks me daily on how at ease I have become with telling people about Karter. Sometimes I even forget to mention that she has Downs syndrome, and I think that this is in large part because I sometimes completely forget myself . She to me is my sweet Karter Bear. I am not going to lie though and say that I do not have "those" days. To put it in other terms I feel as if I am slowly making my way up to the top of the mountain with our new life. There are always a few rocks that fall, and some slips here and there but for the main part I can almost see the peak. Karter's appearance is now showing more facial attributes of a Downs baby. Her physical capabilities are also starting to prevail with some key signs. She is making good strides in the right direction, in large part to her physical & occupational therapy. At the tender age of four months she is not able to hold her head up or even attempt to be seated up with just the reassurance of our hands behind her back. She is still very floppy and these tasks are very hard for her right now. It is sometimes hard to watch her struggle so much to do what should be very natural by now. She is a good fighter though! She has now learned how to keep her hands together for a better part of the day, before she use to just let them hang out to the side. With her new found skill she has mastered two things. She can for one suck her thumb perfectly, and now she is also able to ripe out her oxygen. This has kept me very busy and has lead me to keep tape around me at all times for a quick repair! I am glad though that she is finally showing her little rebel personality.

So it finally happened. Last night Addison finally had a two year old moment and swatted poor Karter on the head. I had give Miss Karter a beaded necklace to play with, and apparently it belonged to Addison. So after discovering that Karter had the necklace Addison tried to take it away from her. Karter had a pretty good grip on the necklace and did not let go when Addison tugged which lead to a small pop from Addison to Karter on the head. After a moment of complete shock I gave Addison a "tap" of her own, and the put her in time out. Upon completing her time out sentence she came back over and gave baby Karter a sweet kiss, hug, and an apology. It was sweet to see that she actually had some remorse over the situation. I knew it was only a matter of time before something like this happened I just was hoping that it would be later rather than sooner. Other than this instance though Addison is very loving to "her" baby. By the way Karter was very tough during this incident and did not even cry, she just looked shocked herself!

All in all we are set to have a great weekend. We will be finishing up a garage sale with my mom tomorrow and then we plan on having a nice family day together. Karter is scheduled to go back to the cardiologist on Monday so I am going to try and rest up till then. Addison also has her first dentist visit earlier that day so it is going to be a long day!! We are still keeping our fingers crossed that Karter does not have to have a NG tube (feeding tube) put in on Monday. Although she gained an ounce or two this week they would have liked for her to gain more. She is eating really well but she is burning her calories a little too fast. So we will see, I know this too shall pass!

Love & God Bless,

The McHams'

Sugar me NOT!

So Addison & I attempted our first batch of homemade sugar cookies. I am a huge fan of the sugar cookies you get at the supermarket that have the colorful icing on them. They are fluffy and soft and the icing is oh so yummy! So this weekend I had the crazy thought that I could imitate these delectable cookies. Boy was I wrong! We found a recipe on the Internet that claimed to be soft fluffy sugar cookies so we tried it out. I should have known when it called for SIX cups of flour that these cookies would in the end taste much like flour. We followed the recipe to a "t" and then let the dough chill in the refrigerator like it called for them to do. After pulling the batter out we rolled them into big sticky balls and put them to bake in the oven. 10 minutes later we pulled out a cookie disaster!! These cookies looked like miniature beige mountains! They were huge and very puffy! Upon taking a glance of the outside we decided we would just try one out and see if the taste was better than it's rocky outside shell. This was probably the worst cookie I have ever tasted! It tasted like bread with a little sugar added in the ingredients. It was a nightmare! Needless to say we did not ice them but instead threw them all in the trash and ate some candy & ice cream instead! :)

On another note, Karter is doing great! Her PT went great on Monday and she is set to go again tomorrow. We also will meet with our geneticist tomorrow and go back for another weight check. At her last doctor appointment she had lost an ounce so hopefully we will have gained that ounce back plus more! If we do not show a pretty upward trend then she will have to get the NG tube on Monday the 9th at her next cardiologist appointment. But trust me, I plan on fattening up this little girl much more before then! The geneticist will be delivering the BIG news tomorrow to let us know if Jeremy & I may be a carrier of a gene that can lead to Downs or if this was just a complete once and a lifetime thing! Either way I am pretty sure that I will be able to come to term with it. :)

Addison and I will be trying more sugar cookies tomorrow night! Hopefully they will be tasty! If you have any recipes you would like to share with us we would be more than grateful!

Much Love,

Tara McHam

I love weeks like this!

So it has officially been a week since Karter Bear was released!! Here are some of my favorite photos from our week!

(Mind you these are all off of my phone!)

Our Sweet Note from Nurse Taylor on the 8th floor!

Karter dressed in her new outfit from Nana ready to go home!

Finally at home, silly cat missed his daddy too!

I could get use to having these two together!

Addi & Karter sleeping a little bit longer while momma got ready for

our daily doctor appointment!

Addi Bug being ever so cool, with her baby doll Gertrude

off to the side being punished...she is such a DIVA!

Sweet Karter after a long day in Dallas passed out!

I just love her big eyes!

~*Our First Week Home*~

Wow! It feels like coming home from the hospital the first time all over again! It has been amazing having everyone under one roof! Addison is still in LOVE with her sister! She does not let her out of her sight very often, but who could blame her? Karter Bear has been doing great at home! Her cardiologist said she still looked great at her appointment on Thursday. She had a chest x-ray and several labs done and all of them came back great! The only problem we have had this week is some weight loss. This is probably due in large part because she is just too tired to get up at night. They have decided to go ahead and let her sleep 6 hours at night and then get up for a feed. She seems to like this a lot more and does not seem as tired. I am just so thankful that this week was full, in most part, of good news. Karter did get to go to her PT & OT to have her work-up to see how far she is behind due in much part to being laid up in the hospital. While she did have PT & OT a the hospital there were several days where she was just too tired to participate. Physically she is behind and will need to catch up. She is still "floppy" meaning that her core neck muscles and her center core (abdominal & back) are lacking a lot of muscle tone. This is a trait of Downs & is one that she does posses. Due to her long stay at the hospital she is a little bit further behind then she would be had she not of had the long stay. THANKFULLY her physical therapist and occupational therapist are both confident that they can get her to where she needs to be in a good amount of time. I am so grateful that I was able to know a wonderful PT to turn to after Karter was born. If you ever need Physical Therapy, Occupational Therapy, or Speech Therapy for children I would highly suggest East Texas Children's Therapy center. They approach each child as if they were their own and really have a family feeling atmosphere! They even included Addison in our initial check-up giving her a snack and a coloring book so that she would also be occupied. Even though we had to see a doctor every day this week but Tuesday I would not have changed it for anything! Next week we go four times again but I still would much rather be home then back at the hospital!!!

So this week has been your typical mom week for me! It has been full of dirty diaper, bottle washing, bottle making, & juice cup finding! I absolutely loved every minute of it and I am just on cloud nine now that we are home. Addison has been such a doll this week! She is now fully obsessed with High School Musical in much part to "her boy" Zack Effron. She has the biggest crush on him! It is pretty cute now I just hope this boy craziness leaves her soon and does not stick around! She has also entertained me with her new found passion for dancing. She will randomly stop and say go crazy go crazy and start in on her dance sequence. She is full of laughter and joy and has been my saving grace. We have broken a few rules this week and have had late night pop corn snacks & coke but hey they are only this little once! So far we have prevented any tragic accidents involving Addison over helping with Karter this week. :)
Jeremy is most certainly glad to have all of his girls back under one roof! Now let's just see if it stays this way in a few more years when the hormones start flying around!!!

I am about to go rein in Hurricane Addison (as my Papaw would call her) for the night and do my usual double check that all of Karter's medicines were given to her tonight!

Much Love,

The McHams'

Praise the Lord we are HOME!

So this past Friday, July 23rd, 2010, exactly six weeks from our second flight to Children's Hospital Karter was released! Karter did have to come home on oxygen, breathing treatments, and lots of medications. I had to take a little quiz over all of the medications to make sure I knew what they were for, how to give them, when to give them, and how much. They also trained me on her oxygen tanks and on how to do her breathing treatments. Karter's lungs are still not fully healed but they were good enough for the doctors to go ahead and send her back home! The reason her lungs are having such a hard time healing is due to a small leak in the pulmonary valve. The leak is still trivial so it is not of much concern besides the fact that it is putting out a little too much fluid. This type of leak happened due to the complexity of her operation. It will be corrected at a later date, hopefully not until she needs her second surgery to replace her conduit. By the way I do not know if I have ever shared that Karter's conduit is actually a piece of a cow vein. This has lead to many debates between Jeremy and I on how it might be a little weird for her to eat red cow meat! :) Anyways they hope to have her off of her oxygen in 6 to 8 weeks, long enough to build back up her lungs so that they may shed that extra fluid from her leaky valve.

Karter is on a variety of medications in which she takes extremely well! The only one that she struggles with every now and then is her Tylenol which is not one that is very important unless she is in pain. The rest of them she takes like a champ!

Upon knowing our release date Jeremy came up to Dallas Thursday night so that he could help me lug back all of our belongings. Actually majority of it was stuff for Karter! It took us two cars to get her back to town! But hey what could you expect from a princess who just spent 6 weeks away from home? The nurses were very sad to see Karter go! They loved sneaking in to hold her and even kicking me out so that they could feed her and hold her. It was a bitter sweet day leaving the hospital. We meet so many incredible people while at Children's!

So when we were able to leave and head home we did not tell Addison. We all thought it best she did not know in case that we were not able to come back when we thought. We went straight over to her Nana & Pa's that Friday evening and as soon as I walked through the door with her "baby Karter" she burst into the biggest smile I have ever seen. She was elated to have her mommy home. Unfortunately it took a little while for her to realize that the baby I was carrying was indeed her sister. It has been almost 3 full weeks since she last saw her and since then Karter has done a lot of growing! Once she figured it out though she was instantly latched to her sister!

This weekend we spent doing a variety of things. Addison and I had a baby shower for our dear friend Heather that we went to help host. It turned out better than I could have ever hoped for leaving soon to be baby Cohen very spoiled! Then we came back home & cleaned the house from top to bottom so that Karter could have the most sterile environment we could create. Sunday we spent at the house doing absolutely nothing! It was perfect, to have my family all back under the same roof with no constraints, other than lugging around Karter's oxygen tube! I could not have asked for a better weekend! Today we started Karter's new regiment of doctor visits. Addison, Karter, the Tank, and I braved it out amongst the real world and went to their pediatrician. Karter received a clean bill of health, and other than Addison telling the doctor to leave her baby alone we had not complications. It was exciting to go to the doctor for once to get good news. I defiantly could get use to this! This week we will be attending Karter's PT and OT sessions, a cardiologist visit, and then a visit to get her shots! I would much rather be at home though and have to go to doctors appointments over living in the hospital!

I can not wait to share Karter's continued improvements with you! One of the most special things this week was Karter's first real bath! Due to her being able to spell if we got her too upset we were limiting Karter to little baths using a sponge and a little bucket up until we went to Dallas. While in Dallas we had to continue this regiment because of all of her monitors. However, all of that changed this past Sunday night when we were able to pull out Karter's little bath holder and try a "real" bath! Even if she got real upset it did not matter anymore because she would still be able to receive ox gen throughout her body! We sat her down in the tub with Addison and she LOVED it! Both of the girls were smiling and having a great time. Addi just loved being able to help wash her little sister. We did have to stop her from pouring water all over Karter's head but other than that she did fantastic! It was nice to be able to share Karter's first bath with Addi Grace.

We look forward to a great week full of stories to tell the world! We can not thank anyone enough for all of the prayers that went up for our precious baby girl. God does answer prayers and miracles do happen! With out your prayers and our Lord there is no telling where we would be today. Our faith created our strength for this whole ordeal. God is always good!

Praise the Lord we are HOME!

Love,

Tara McHam

Karter's View

~*From the Hospital bed of Karter McHam*~

So I was moved to the eighth floor on Monday. Mom and I were both excited!!! We thought this meant that we would finally be going home and I could loose all of my wires and tubes. Unfortunately the doctor came in yesterday with a different idea. The good news is I will be going home soon; however, I will have to have oxygen at home and possibly my feeding tube. Yes that is right my mom is having to learn how to put in and take out my feeding tube plus she is now learning all about oxygen. The reason I have to have oxygen at home is due to the complexity of my repair one of my valves has become leaky. This leaky valve is causing me to continue to produce extra fluid which would like to go to my lungs. Therefore my lungs are not really getting the time they need to heal on their own. So I will go home with my oxygen tank to give time to my lungs to be able to heal properly. I will be on oxygen for 6 to 8 weeks. The doctors feel that I will be able to then have healthy lungs that can guard off this extra production of fluid. In the future I will have this leak fixed, unfortunately we do not know exactly when. The doc said it all depended on me and the severity of the leak. They have four different stages for my repair and for this valve. These stages are trivial, moderate, mild, severe. Right now my valve and my repair are both trivial so they are not of great concern. I will regularly be monitored to determine my stage which will give my daddy and mommy more of an idea of my next surgery.

Although I try to pull out my oxygen cords on my face Nurse Valerie always makes sure that it goes right back in. I tried to tell my momma on her but she for some reason agreed that I needed this cannula in my nose. I can not wait to have it out!! My PT and OT (physical and occupational therapy) ladies have been coming in everyday to play with me. They bring in lots of neat toys for me to look out and reach. They even let me kick them with my legs!!! After they come and play I get really tired and need a nap but they all said they understand. Mom loves it when I nap because she gets to nap too! Apparently she is still catching up on her sleep from our first night on the eighth floor. We had a really busy night that night! Monday night I went to bed after my last feed at 12:00 pm, then at 2:00 am they came and woke me and mommy up to draw some blood, at 3:00 am I got to eat again, shortly after I kicked out my IV and had to get another one, at 4:00 am I had to go have a photo shoot ( I am still confused as to why they need to take a black and white photo of my insides...guess it is as pretty as me on the outside!), then we came back for a quick nap but I got hungry and ate again at 7:00 am. After eating at 7 the Doctor, shadowers, and nurses all came and did their rounds. They must love me because I got to see about 20 different people! Due to all of this commotion mom and I had to wait till way later that afternoon to get in a good nap. My mommy was starting to scare me with the black bags under her eyes but her nap did her some good and now she seems to be refreshed!

I hope to be able to go home Friday morning. I can not wait to see my sister again. I miss her, although I do not miss getting pulled across the floor or sharing my swing! Well guys I am going to go back to my nap time, I just wanted to give you all an update just like mommy does! :)

Hope you all enjoyed my news!

Love,

Karter Ashton-Faith McHam or as I like to be called Karter Bear!

P.S. I AM FEEDING FROM A BOTTLE!!!

The light keeps getting brighter!

So this morning when we walked into Karter's room her vapor therm machine was gone!!! She is now just on a normal nasal cannula but I am almost positive that will be going soon too! Her lungs are almost back to 100% function. She is really starting to look like herself again. The more and more wires and tubes she looses the better she must feel because it has been showing. Today they took her feeding tube out of her abdominal area and moved it into her stomach. So now her feeds are almost back to a normal schedule. If she does well with this transition then she will be back on the bottle in no time! I know she just can not wait, she has about sucked her pacifier to death. I just can not believe the turn around she made in just a few short days. From having one of her lungs all but collapsed to this I am now a firm believer in miracles. She would not be where she is today with the healing powers of our Lord. He has heard the prayers for our sweet angel and has truly shown us what an amazing God he is to those who seek & believe in him.

By my predictions we will be home sometime this next week. There is always the chance of another complication coming up, but if she keeps up the hard work then we will be back in Tyler in no time! I can not wait to have my family all back together again! I know Addison is ready to be able to see her sister when she wants to. Poor thing has not been able to see her two weeks.

On another note, Addison used the potty again today! This time she even used an adult potty instead of her potty chair. Jeremy and Addison were heading back to Tyler this afternoon when he stopped to get them both something to drink. When they got in there Addison promptly told him that she needed to go potty, so he took her like a good daddy! She is doing so well with potty training herself! I can not wait for her to be a "big" girl and wear those little panties all the time!! Of course Jeremy was super proud and found the nearest Wal-Mart and took her in to buy her a treat! I think she ended up with a DVD, a new toy, and something else. She is just a TAD bit spoiled by her daddy. I am so thankful that they have the relationship that they do. I can not wait for him to create another special bond with Miss Karter Bear.

All in all this weekend was filled with great news! The Lord most of known that I was getting to my breaking point. He truly will never give us more than we can handle. I hope that I am able to continue to turn it all over to his hands and allow him to carry around my burdens.

I do ask tonight that you say a small prayer for Miss Addison. She had an ant bite her the other day on her chest. Today when I looked at it, it had a green head to it. After she took a warm bath this morning I tried to pop it thinking that it would be just an easy head to get out. I was wrong. :( It has some type of boil under it and I tried squeezing as much as I could but never got the head. The last time this happened on her leg it had to be lanced at the hospital. She goes in tomorrow to the doctor so hopefully she will be able to better assist us with an solution. I just pray that it is not infected! Her Pa may also need some prayers in the morning for he is the one taking her into the office! God bless his soul!

Thank you all for your prayers and continuous support. Without you I do not know if this journey would have been as easy to take as it has been. I look forward to a hopefully speedy recovery & getting Miss Karter Bear home so that we can share more than hospital news!

Love,

Tara McHam

The potty chair sings!!

Yes, that is right Addison's potty chair finally sang a little jingle to her tonight after her first time to use it on her own!! We received the phone call just a few minutes ago from Nana! She said promptly after getting out of her bath tonight that Addison said she had to tee tee and went straight to her potty chair, lifted the seat, and sat down. A mere few seconds later the chair began it's jingle of joy! She finally went tee tee on her own! Nana did not even have to ask!! She may be stubborn and do things in her own time but when she does we are all just overjoyed with her accomplishments! While I HATE not being there for her first time I could never be more proud! She is coming up tomorrow and I can not wait to get her a treat for using the big girl potty! (Well that is her little princess potty!)

Just had to share!!

Love,

Tara McHam

Nine

So it has been NINE days since we were last able to hold precious Karter. Thankfully that all ended today when they finally placed her in my arms. It felt so good to hold her, much like the first time. I was just overwhelmed with emotions and a warm good feeling that flooded my body like a flash flood. It came on very fast and seemed to engulf me; however, unlike a flash flood that almost always passes by quickly this feeling lasted. I think it has me on cloud nine! Nothing is better than holding your baby. The time you get to hold them while they are still little is already, in my mind, limited and to take nine more of my precious days away was enough!

So Karter is doing wonderful, she did get to have her lines that connected to her heart removed today. Her lung x-ray from yesterday, June 15th, showed great improvements from the 14th. However, we have not made any progress today and have even made a slight step backwards on the x-ray comparison. They took her up to 15 liters to help relieve her lungs from the heavy work they were having to do while having a built up of fluid in them. The high amount of flow they gave her also was suppose to help her from having a collapsed lung. This flow did help in that it brought her lung back up. They took her down to 10 liters today even though she did not show much improvement from yesterday's scan. They did this in order to see if her little body could start to move out that fluid on it's on without the help of the vapor therm. Hopefully we will show some more improvements on our next morning x-ray!

Karter still has a feeding tube but it bypasses her stomach and just feeds into her abdominal area in order to make sure that the stomach does not put too much pressure on her lungs. They hope to move the tube back into her stomach by the first of next week and then begin feeding her through a bottle. We still have a little ways to go but we are defiantly able to see the light at the end of the tunnel. A few days ago they were worried about a potential infection but ALL of her tests have come back negative! Thank the LORD! They are still having to give her some platlets every few days but hope to be able to cut this out as soon as her lungs are good and healthy.

Today was also a very difficult day for me. I have been doing so good up to this point with everything. This morning our social worker came up to see us with some great news about a new disability program for families like us who do not qualify for any other government aide such as Medicaid and disability financial help. While it was great to hear that she would now probably be able to qualify due to her extensive stay in the hospital it was also a hard realization for me as to why she would be considered disabled. I do not think that Down Syndrome is a disability. The state on the other hand does. While I know I should be happy that we will be getting a little bit of help in providing this sweet girl with everything she needs it is also heart wrenching to me that people might look at her and think of her as disabled. To me she is nothing but normal. She is my sweet angel. She is going to go on and do great things in life. I hate how something so small can still knock me down like running into a brick wall. You would think that her other issues would effect me in a greater way but no it is the simple reminder of being classified as disabled, for having down syndrome, that turns my world upside down. While I know this will get better with time I just wish it still did not hit me so hard. I do remind myself though that she does not have to be defined by this so called "disability". She is simply beautiful baby Karter, my sweet little cuddle bear. I most certainly will not let her or our family be effected badly by this blessing, we will only rejoice in all of the good qualities that it will bring into our life. We will live and go on about life just as normally as we did with before with Addison.

Over the next few days I hope to have nothing but good news to relay to team "KAM" (her initials) as some of Terri's workers call themselves. We hope to not have any more complications on her road to recovery, and if we do I pray that we head them off far enough in advance that they become absolute! Even though I can not wait to get home I would much rather for Karter to take her sweet time and ensure a great recovery! God bless you all for your prayers, thoughts, and love! I am continuously blown away by every one's friendship. I would like to especially thank Austin Gipson for putting Karter at the top of his prayer list! What an awesome young man he is to already know the importance of prayer! Great job Megan!

Love,

The McHams'

Encouragement

Karter Bear

Finally a big girl bed!

I can not wait to hold this sweet thing!

Karter Bear...poor thing looks like she has been beaten up!

A sign Miss Libby made for Karter!

A sign made by Aunt Jordan and MiMi

Zoo Time With Addison Grace

Addison enjoying the slide at the Zoo playground!

"Now mommy you may need to buckle up!"

Daddy and Addi point at a giraffe below!

She was thirsty so she was not going to smile!

Beautiful girl sleeping away after a long day at the Zoo!

Karter's Day ~July 12

As of this morning Karter was not any better but she was also not any worse. Her lungs have not changed from yesterday, but her fever has disappeared. They started her on several new medications today. One for her stomach, one to make her potty, another lasik to make her pee out all this fluid, one to make her blood pressure come down, one to get her potassium level back up, & one to keep her calm. They have told me the names of each and every medicine but I would just being lying on here if I told you I remembered them! All I know is that she is on a lot more medication today then she was yesterday. They did not give her an aspirin today because they thought it might be interfering with her heart rhythm due to all of the other medications. However, she will start back up her normal dose of one aspirin a day tomorrow. She will take this for the rest of her life. Karter did wake-up today and while I am still not allowed to hold her (they could not pull the line out from her heart due to the inflammation) I did get to talk to her and see her smile again! She even took her pacifier for a little while today! Dad would be proud because she took the one he bought her! :) It was nice to see some life in her eyes without her being so agitated. Hopefully tomorrow they can go back down on her vapor therm (they came down to 8 this evening, so far so good) so that she can take a real bottle instead of getting all of her feeds through her feeding tube! Thank you guys for all of her prayers last night! I just know they worked for her to be doing so good today!

Steve

Well today I went and had a snack outside on the patio in hopes of seeing Steve. Sure enough he was there! I was so glad to see him for prior to going outside I had searched high and low for some seeds! This hospital is awfully big so it took me a few floors to find the right vending machine. While the sign on the outside says not to feed the birds, I went ahead and feed Steve. Jeremy did not see him as a bird but instead as a friend so technically I am not feeding a bird, I am just feeding Jeremy's friend Steve! Steve has started to touch my heart here lately. I think he knows when we come outside because he always flies right on in to us. Today Steve was cooing so we had a little talk about Miss Karter. I think he told me that he would watch her from outside her window. That way if she acted up while I was gone at night he could tap on the glass to alert the Nurses. I would not put it past Mr. Steve for he seems pretty domesticated to me, well that is for a Pigeon at least. I guess I need to start making more friends than just Steve but he is just so easy and such a great listener I think I might just continue to enjoy his company on my snack breaks! :)

Well I am going to call it a night and watch my little princess sleep! If I was magical I would give each one of you a BIG hug tonight for your prayers! I just know that these prayers are helping Karter with her strength and I could never thank all of you enough for this gift you have given us!

Love,

Tara McHam

Staying Strong

So everything was going well this morning, they even turned down her vapor therm from 10 liters to 8 liters. It still looks and sounds like they are blowing off her nose no matter the 2 liter difference. This afternoon around 6 though they came in and turned it back to 10 because she was having a hard time breathing and could not wake-up all day. Yesterday she played with me and cooed but today she could not do anything but sleep. After turning it back up she started to perk up and stayed awake for a few hours. Her Papa Joe and MiMi came and saw her today and talked to her throughout this evening. We all went to eat supper and when we came back the doctors were concerned she was developing a slight fever. When they took her temp earlier today it was about 97 underneath the arm which would make it about 98 degrees. Tonight, however, her temperature was 99 under the arm which means it is about 100 degrees. Therefore they are fearful for an infection, or maybe even something else going on in her lungs. They were a little hesitant to say but they will be monitoring her heavily through the night and will be sending out more blood work to see if they can catch anything before it gets too bad. Please just pray that we do not develop a lung infection or pneumonia. Hopefully she will feel like herself again tomorrow and wake-up and play with me! I do miss her little smile!

Thank you all! I also ask that you keep her friend Max and Haven Grace in your prayers. Max has had to have several procedures done in the last few days but seems to be doing okay. Haven had to be re-admitted today at the age of two and is now on the top of the heart transplant list.

Love,

The McHams'

P.S. I might get to hold her tomorrow!!!!! Hopefully! If they are able to pull out two of her lines leading to her heart than I will get to hold my sweet girl again!! YAY!!!

Week 4 Day 2....Karter is THREE months old today!

So we have officially been here 4 weeks and 2 days or exactly one month. But I would rather like to think of today as Karter's three month birthday! Looking back three months ago to that Sunday evening it is astonishing to me how far she has come. This time three months ago we were fearing the worst and now look where we are today! We have a BEAUTIFUL baby girl who has fought for everything. She is my inspiration.

Karter is OFF of the ventilator and now on just a nasal cannula. However, she is on somewhat of a special nasal cannula called a vapor therm cannula which in essence is shooting vapors (& some oxygen) through her nose to help break up the junk in her lungs. Her lungs have NOT shown very much improvement since our last blog but they did decided to take her off of the ventilator because it was better for the recovery of her heart. She is so strong! They have pulled her off of her blood pressure medicine and have almost weaned all of her sedation medication. They hope to have her off of the sedation by the end of this evening. They will also be pulling her off of her post OP heart medication which allowed her heart to remain pretty calm so that it could heal. All in all she is showing great improvement strides in everything but her lungs. They do feel as if their "massage" treatments and cannula are helping her to get the junk out. She has coughed up a lot of it today and hopefully will continue to do so throughout the night. She started taking feeds today through a MG tube (feeding tube). She can not take out of a bottle until her lungs are a little clearer so that she will not over exert herself. Karter may have to have another drainage tube put in her belly though tomorrow because she is still having too much fluid in he abdominal area. Right now they are taking this fluid out through a tube in her nose, but this is just a temporary fix. If she continues to have a high rate of outflow then they will insert the tummy drain to help out. She still has one drain coming out of her heart region that they are hopeful to be able to pull out tomorrow because the drainage has slowed throughout the day. So all in all Karter is doing good, she is just having a few minor bumps in the road to her full recovery.

Yesterday we took Addison Grace to the Dallas Zoo. She had an absolute blast!!! She rode in a Safari wagon, and really enjoyed the monkeys. In fact we did not see very much more than the monkeys. We did see the elephants, giraffes, and the African animals but other than that we did not get a chance to see everything. It was a pretty hot afternoon so after about two hours she was done with the Zoo. We stopped in the gift shop and got her a monkey purse which she just adores and got Karter a huge stuffed elephant for her room. Karter I do believe loves her elephant as well! :)

~*Update on Karter's Bow of Faith*~

We received a lot of boxes in the mail and Terri, my mother in law, brought them up to the hospital. As soon as I get them tagged I will get a count together but I am sure we will be well over 250 bows and hats donated!!! We are now going to be working on sending some bows to other children's hospitals over Texas. I have a volunteer that would like to do Cooks in Dallas, but I will be looking for people to help me get them to Houston, Austin, San Antonio. If you know anyone please let me know!!! I will take them, tag them, and then send them off to the desired location! How Awesome to be expanding this project already?? The generosity of people has been amazing!!! God has truly already blessed this project!

Anyways Karter Bear just woke up so I am going to attend to her! If I can find where I put my camera I will post some pics from the zoo and of Karter later tonight or tomorrow!

Love,

Tara

A Prayer for Steve the Pigeon

Dear Lord tonight as we lay down to sleep I ask that you take care of Steve. Steve you see is one of Jeremy's newest friends that we met at lunch today. We believe that Steve the Pigeon was born with a malformed foot. While he can still fly and move it troubles my husband about his poor little foot. If you would please watch over Steve tonight until we get back tomorrow to give him his daily feeding. In your name we pray, Amen.

Note about Steve: We met Steve while sitting outside today at lunch. Jeremy had an immediate connection with this Pigeon due to his "disability". Steve, however, does not act like he has an disability. Jeremy did start to feed Steve today. The little guy (well hopefully guy) now also has a love connection with my husband. He did respect our space and stayed off of our table but he enjoyed a lot of his time next to Jeremy's chair....I wonder why??? I am sure that we will go back out to the patio tomorrow to check on Steve and to give him an adequate feeding! :)

Love,

The McHams'

God always will answer...

First and foremost Karter is still holding stable. The lower region of her lungs are having micro collapses which in essence means that a lot of the little air sacks in the lungs are starting to collapse potentially leading to a more complete collapse. In order to head this off they have kept her on her ventilator and have given her a new medication. They also have begun a more aggressive treatment with some lung therapy including little wave beatings by hand, the hand pump, and breathing treatments through the hand pump. So at this time while it could become something serious they feel as if they caught it in plenty of time to solve the problem. She also has a small build up of mucus in her lungs so these treatments should help that issue as well. On her four o'clock x-ray she did not show any signs of improvement that is why they went ahead with the aggressive treatments. The doctors do not feel at this time that this is a set back but rather just another little bump in the road to recovery. They are hopeful to excavate tomorrow morning so we will see!

Today Jeremy & I decided to stay at the hospital for lunch since she was having a little bit of trouble. I am so thankful that we did for today was one of those days where I just needed a little sign from God saying that he was still here and that he would always answer. Upon sitting at lunch at the outside patio I began to wonder if the hospital would allow Karter to stay here for all of her upcoming treatments throughout her life, even as an adult. I asked Jeremy and explained my reasoning that most Down's people are just big kids at heart. The staff here is AWESOME and I just want her to always get this kind of care. Not even 30 seconds after asking this question an SUV pulled up. As we were watching the family start to get out I noticed exactly who the patient was in the vehicle. Out stepped a beautiful lady probably in her late 20's to 30's with nothing other than Down's Syndrome. Even though it was probably over 90 degrees outside I began to get the chills. God answered my question....Karter Bear will always be welcomed here at Children's Medical Center no matter what her age. How wonderful is our Lord? I pretty much lost it at this point and tears just ran for all sorts of reasons down my face.

I am still in shock tonight over my answered question. I know everything happens for a reason but it is great to know who is behind all of this reasoning, our Lord and Savior.

Tonight I thought I would share two more of Karter's post OP photos. The second one really shows her incision pretty well. The first one is from last night and she was covered by a blanket because she still had all of her chest tubes in which as of today all but one has been pulled out! :) Enjoy!

Beautiful Angel...

sleeping away with more nose tubes for her other treatments tonight.

Love,

The McHams'

Quick Update on Karter's Lungs

So they took two x-ray's of Karter's lungs. They took one this morning and then another this afternoon at about 1:20. Both of these X-Rays showed what I would call a slowly creeping cloud. This cloud was then explained to us to be a sign that the lower half of her lungs are starting to collapse. This can happen after surgery since these babies are deeply sedated and are not taking in deep breaths. Therefore they will do two chest recruitments. These chest recruitmen's will consist of them tapping on her chest and then using a bag to pump more air flow through her lungs. This should allow them to expand and open up. The doctor's feel as if this will solve the problem and allow them to be able to still pull her breathing tube later this afternoon, or tomorrow. If they are not able to pull the tube today it is still okay, this will not really be considered a set back since she is still doing so good. In fact had it not been for the x-rays they may not have even have known this was happening because she is still showing good stats. They had taken her off of her pain medication and were almost done weaning her from her sedation medicine, but with this new situation (not complication) they have put her back on both. As far as everything else this afternoon she is looking good. They took her off of her pacemaker and she was doing well but for the time being they will put her back on it for the chest recruitments.

I will let you know more this evening on this part of her recovery! Thanks so much for everything!!

Love,

The McHams'

Karter's Surgery

Karter went into Surgery on July 7th, 2010 at 9:15 a.m. she came out of surgery at about 8:00 p.m. that evening. Seeing our baby girl for the first time after surgery was amazing. To see her and know that we would no longer have to worry about her losing oxygen so fast was an incredible feeling. The repair went very well and they were able to get a good fix. They did have to insert a Pulmonary Valve Conduit because her valve was a size five and they needed it to at least be a nine. Therefore he put in a size 12 conduit which will allow more blood to flow. Due to them having to use this conduit she will have to have another surgery at about age two give or take. She will then require a few more surgeries as she grows to make the valve an appropriate size for her body.

Today she has been very stable. They are having to watch her blood pressure very closely because it keeps going either too high or mainly too low. They are giving her a little medicine to help with this and they are also giving her some volume (fluids through a syringe). They tried to wean her from her pacemaker today. Her heart rhythm looked great when they did it, it only dropped to about 130 beats per minute which is great for a baby. However, the rest of her vitals dropped below what they would like so they had to keep her on it for now. It is good news though that they were able to pull it off and keep her heart rhythm good. The other statistics should level out over the next few days so they should be able to pull it for good soon. They still have her on her ventilator but are slowly weaning it and hope to be able to excavate her tomorrow. It will be good to see her breathing on her own again!

Karter Bear did wake up once today so they gave her some more sedation medicine so that they could pull one of her small lines from her heart. After pulling this line they began to wean her off of her sedation medicine. She still has pain medication which is keeping her asleep and pretty still throughout the day. If they are able to pull out the breathing tube then she will be able to eat again tomorrow. How amazing is that?

It simply is astounding to see how much they can do with these little ones. I mean the girl just had open heart surgery yesterday and she might be eating again tomorrow! Wow! One of her new friends Allison (who also has down syndrome and an AV Canal defect, which was one of Karter's defects) is already headed to the recovery floor and she just had surgery yesterday! I can not believe how fast these precious babies heal! I know all of this is in accordance to God's plan but it still leaves me speechless to see his healing powers on these tiny angels.

I will leave you tonight with two pictures of Karter from last night. She just looks like a little sleeping beauty.

Karter with all of her tubes and her little bear watching over her!

All of these lines and tubes will slowly disappear over the next few days.

By the way our nurse was quickly told by the other nurses that Karter was to have a bow on her head! :) They knew if they did not put one there then her mamma would! Haha!

Thanks for all of your prayers and support! Please just pray now for a good recovery without any complications!

Love,

The McHams'

Quick Bow of Faith Update!!

This precious man received one of our little hats! He has been at Children's since April 7th. He has hyoplastic left heart syndrome. Isn't he a doll. Please say a little prayer for him and is family! Thanks!! :)

Surgery

So since the last update a lot has changed...we are having surgery, in fact it is happening as I type this update. Karter's spells began to become more intense and more frequent. They feared that if they did not take action now that they might not be able to pull her out of a spell; therefore, she was set up last night for surgery first thing this morning. They let me know at about 6:00 last night that she would be their first case. They felt that her heart just could not make it much longer without taking action. Jeremy came down first thing last night and we were able to stay the night with her in the ICU. However, I was sent to bed at about 3:00 this morning by Nurse Libby. Now you have to understand that Nurse Libby was not Karter's nurse last night but actually had the kiddo next door. She has attached herself to our little angel though calling her Princess Karter. So when Karter aroused at three this morning Miss Libby took over the duties of holding her through the rest of the morning. I really just think that she wanted to hold Miss Karter before she was sent back to surgery. I do believe that our Nurse Sarah then took over for Nurse Libby's other patient so that she could continue to hold her throughout the morning. It is amazing to me to see how many nurses have attached themselves to Karter. They actually usually fight over who gets to sit in her room at night to hold her. In fact there were many times that we heard of Nurses just going in their to hold her even if she was dead asleep! I love it how they make it a very loving environment from her and treat her as if she was their own child. The Nurses here at Children's are AMAZING!!!

Now on to her surgery. It should take anywhere from 6-8 hours. They took her back at 9:20 this morning. She will be on a bypass machine for her heart and lungs. They may have to replace her pulmonary valve with a fake one but they are hoping to save it. It is a 50/50 chance that they will have to replace it. She will also have in place a temporary pace maker for her heart. This pace maker could become a permanent part of her life but we will not know about it for days after surgery. If it does become permanent then she will have another surgery before we leave to insert it to be permanent. She will also have many tubes and lines inserted in order for them to be able to better access her throughout surgery. As we know more I will defiantly post updates on my Facebook and I will post on here as soon as she is out. Please pray for our fighting angel!

A note from Nurse Libby!

Daddy & Karter before she headed back.

Holding her duckie sucking away on her passie.

Mommy & Karter getting some last minute loving.

Much love,

The McHams'

Quick Update

Karter Bear decided not to behave herself on Sunday sending us back to the ICU due to another intense spell. So we will be in the Cardiac ICU until further notice. She did have one spell since being in the ICU but it was not as bad as they had been on the eighth floor. If I was to guess I would say that we will stay there another few days then be back to the eighth floor to work on gaining some more weight. She is up to almost 10lbs so we only have two more to go. Too bad I just can not give her two of mine, Lord knows I have plenty to share! :) The good thing about being on the third floor is that she does have a cute night doctor! He is delicious as Terri would say! Maybe that is why Karter was in such a hurry to get back down there! Just Kidding! Anyways due to Addison being down last night, I am rather tired so I am going to call it a night. Thanks for all of your prayers and support it means everything to our family!

Love,

The McHams

P.S. Stay tuned for another tale of the hospital...this time it is the war of the floors!

Gray hair here we come....

So I went home this past Wednesday afternoon and spent a wonderful three days with Miss Addison Grace. We had fun cleaning up our house and going to gymnastics (in which she did not participate). It was wonderful to be at home again after my three week stay with Karter in the hospital; although, I still felt torn about being at home and not with Karter. A few days ago I told a dear friend of mine that we all needed "mommy" breaks sometimes and I guess I was heading my own advice and taking a break from being hospital mommy! Addison was defiantly a sight for sore eyes! She was absolutely fabulous to be around. The only heartbreaking part was when we were at home and she was calling around the house for Baby Karter. She made me lift her up to all of Karter's beds just to make sure that I was not lying to her about Karter still being sick. It was very emotional for me to watch her look everywhere for her sister. She then proceeded to pick up one of her babies and call it Baby Karter. She gave it to me and told me to feed it and change it! Haha! She is such a ham but I am guessing this is one of her many ways of coping with the situation. After all she has not been able to see her sister in two weeks!!! Thankfully she will be able to come up to the floor tomorrow and see her! I can not wait to see her little eyes light up! She just loves her baby seester (as she would say).

While I was gone Karter behaved herself for my grandparents and for my mother. She did not have any so called spells. She did have to get a FEEDING tube though because she was not taking in enough calories per the doctor at every feeding. However, since she has had the tube she has taken in more than enough feeds at every feed and has not had to use the tube except to get her medication! She is such a little stinker!

Today she did have three big spells in which she dropped her oxygen level pretty low. I believe the lowest it got was about 37. After her second spell they did give her a shot of morphine which in general is used to make the heart calm down so that the valve does not continue to spasm but instead relaxes. They believe this shot of morphine caused Karter to relax too much sending her into yet another spell. All in all each spell lasted from about 30-45 minutes. Instead of being on one liter of oxygen she is now on four for the night. So far so good. They did threaten that if she had another major episode that we would have to go to the ICU for more one on one observation. After her last feed at about 11 she did let her stats drop from the 90's to the 60's almost making the doctor put in the call to the ICU. Luckily though she pulled it back up within about 10 minutes! I do believe that she is just showing off for her dad and I. Letting us know who the real BOSS is around here. :) I really think that she may be the cause of my first grey hair! I am very thankful for all of the hairstylists on Jeremy's side of the family!!

The doctor would like for Karter to be about 12lbs now for surgery so it seems as if we will be waiting just a little while longer for surgery. They have her formula fortified even more so hopefully we will continue to gain weight at a constant rate! Prayers are needed for this weight gain and for the health of Miss Karter while we are waiting "patiently" for her to gain weight!

Update on Karter's Bow of Faith:

To date we have received about 157 bows!! That is amazing! I have not been able to check the P.O. Box but from what I hear we should have some there! All of the girls and boys here are enjoying their new head gear from what we have heard. I still have not received any photos so I may have to go bug some of these parents ....who would not want to show off their kiddo though? :)

I hope everyone has a Happy Fourth! I know I will because Miss Addison will be coming up tomorrow to be with us! From what I have heard there is a magnificent Fireworks show that we can see from our room...what better than to have everyone together on this holiday! I am so thankful for the men and women who serve this country to provide us with our freedom!

Here are a couple of photos by Rose Bailey Photography! These were taken almost a week before we came back to Children's! Glad we got them in just in time!

God Bless,

Tara McHam