Clagett Triplets

Great Pics & Fun!

I have this photo that Liz took of the girls and I just can't stop looking at it..I love it! Each time I look at the photo a new thought comes to my mind...

 

-I can't believe that  30 toes were inside of me

-How much they have grown in one year...from tiny, tiny babies to this

-Three pairs of baby shoes are expensive

-How much they love their shoes..this could be scary for the future!

-That it is impossible to keep them in one place...you put them down and they immediately walk in three different directions!

-Life is becoming easier in so many ways but harder in so many others now that they are walking!

We have been busy so far this summer. With the help of Liz,  I took all four girls to my parent's house in Frostburg for a few days and we had a blast. They went to story hour for the first time. I had three adults with four kids and it was still an adventure. We took them to a pool for the first time which they loved! We went to visit friends for a cookout in PA. Thankfully we still have friends who invite us despite our craziness. Thanks to Nikki and Tara for helping us have a fun cookout. Liz took this photo of the girls getting ready for the pool....

Birthday Pictures!

My Montage 6/3/09

We're ONE!!

The girls went for their one year old checkups and shots. It was nine shots total three each and the appointment went well. They each are doing great with the developmental milestones and are right on track. They are all walking..or taking 10 plus steps at a time. Brooke and Brynn each have four teeth and Lexi has two teeth. They are getting so big..

Brynn: 20 pounds 6 ounces

Lexi: 18 pounds 2 ounces

Brooke: 19 pounds 2 ounces

They had a great time at their Birthday party. It was the perfect day with PERFECT weather. Lexi and Brynn loved their cupcakes. Brooke would not touch hers at all but Lexi and Brynn finished it for her. Brynn loved the wrapping paper and loved eating it even more!! It was a great day and now I'm the proud mama to three one year olds!

   

Birthday Week!!

The girls turn ONE on Sunday. I truly can't believe that it is here. Someone told me the other day, "the days are long but the years are so short." That really sums up the last year for me. I was trying to think what even to type to describe the last year and I don't even think there are words to describe it. It has been a year filled with strength, stress, commitment, laughter, tears, appointments, friends, family, endless help, thankfulness, courage, success, promise, prayer and love all rolled into one. I created a slide show of our favorite memories, it is a little long but I did my best!

Thanks to all who have helped us succeed and make it through the first year! I can never repay everyone for what has been given to our family. The girls have been so lucky to have you share their journey - thank you!

Make photo slide shows at www.OneTrueMedia.com

A week of firsts and lasts!!

It has been a week of firsts and lasts for the girls....

Brooke went to her helmet appointment yesterday and had her final scan of her head. Everything looks great and the improvement is remarkable. It will be nice to stop our once a week trips to Columbia for appointments. Brooke said goodbye to her friends yesterday and the best news..no more helmet!!

 

Firsts...

-the girls tried scrambled eggs this week and loved them!

-the got their first pair of shoes, very exciting!

-Lexi slept through the night for the first time, very, very exciting!!!!!

-for the first time since the girls were born all four of my children slept through the entire night! That means mommy got her first full night's sleep (its only been a year!)

-the biggest news is the girls will be ONE on Sunday!!

This is a pic of the girls with their new shoes...

Children's Hospital of Boston

Children's Hospital of Boston called us back this morning. Lexi's MRI and Sonogram were presented at their medical review on Wednesday night. They are confident with their diagnosis of Macro-cystic Lymphatic Malformation or LM for short. Essentially this is the same thing as a cystic hygroma but they do not use that term in Boston. So why did this happen to her? There is no way to tell why people get these. It was there at birth and is a rare chronic condition that according to them is seen quite frequently in multiples. So what does this mean? Because of its large size and the fact that it is macro-cystic they are recommending sclerotherapy as the first treatment option. They are thinking at this point she will need three sessions of sclerotherapy. They are not recommending treatment in our area but in Boston.  This will mean she will be admitted to Children's of Boston for a three day stay three different times, typically with two months between each session. They are recommending that we try to get her over 20 pounds before they begin treatment. This will allow them to give more drugs at the treatment session. She is around 17 1/2 pounds right now. So it is looking like she will begin late July early August. They are calling me back with a date and making sure that the doctor is comfortable with not seeing us before that appointment. If he wants to she her before the first treatment session we will go to Boston on June 19th. The hope is that with sclerotherapy the cysts will combine together and shrink and scar over. If this happens and they then become microcycstic at the end of three treatments, they will then attempt to surgically remove the malformation. If it does not become microcycstic buts gets smaller, they will monitor her for symptoms and make a new plan at that point.

They explained to me that it is a chronic condition for which there is no cure. The good news is that she could live with this condition and after sclerotherapy and or surgery be fine. The flip side is that some patients have issues. They said some girls have problems at puberty or while they are pregnant. It isdifficult to tell how Lexi's body will deal with this. They said there really is no way to know but to watch her carefully and monitor her symptoms. We will pray that she will be one of the ones that undergoes treatment/surgery and does fine throughout her life. She is strong - she has proven that since birth - and is a fighter..so I'm very hopeful that it will be ok.

We will need to watch the area of the LM closely between now and the first treatment for signs of infection which would be redness or swelling. I was so nervous today to get this call..mainly due to the fact that it has been so much waiting and not knowing. It feels good to know and have a plan of attack. When you get pregnant with triplets you get a LARGE paper printout from the doctor of all the things that can be wrong with your babies and reasons to NOT go forward with the pregnancy. So today it was hard to hear that there is no REAL cure for what is wrong with Lexi and that its something that she will have to deal with for life. But today I hugged her and was thankful that out of that long list of things that this is the one. It truly could be so much worse. She is going to have a long year undergoing all of this treatment and its not going to be easy on our family to go to Boston every two months but we will get through it knowing that it is where we need to go to get the best treatment/outcome for her.

Thanks for all the prayers and support! She is blessed to have so many people who care about her!!

MRI, One Year Ago Today & Walking!!

MRI...

Hopkins called on Monday with the official MRI results. They were unable to make a diagnosis from the MRI. It was very upsetting not to just have a diagnosis so that we can just move forward. They did say that her chest is clean which is good news. They also stated that it is some sort of malformation which we already knew. I talked with Children's Hospital of Boston on Monday and they were very helpful. They told us that a diagnosis has to be made before ANY treatment can start. Depending on what type of malformation it is, either lymphatic or veinous, determines the type of treatment/drugs they would use. They received the MRI yesterday and promised that the doctor would look at it with their team and call back before the weekend. They are confident that they will be able to make a diagnosis. If not then an immediate biopsy would be ordered.

One year ago today...

One year ago today I woke up like any other day and got ready for my weekly appointments in Baltimore. We made our normal trip to see our sonographer Suzie and get our usual peak at the babies. When she started the sonogram and the babies appeared on the screen we all looked at one another. It did not look like our normal sonograms. Our normal sonograms where pictures of three babies moving everywhere and always going in different directions. This morning was different...three babies, three heads facing down, all lined up ready to go. Not what any of us were expecting to see. Actually Suzie said that it was something that you do not see often with triplets. Brooke, Lexi and Brynn had decided that they were ready to make their entrance into the world..just a little too early for the doctors. So I was rushed to labor and delivery where we found out that I was three centimeters dilated. So I began my stay and fight to keep the babies inside just a little longer at labor and delivery at University of Maryland.

Walking...

Brooke is officially walking. According to their therapist, 10 or more steps is walking. She is taking 10 plus steps at a time and walking from one side of the room to another. She is very proud of herself!!

MRI

Lexi had her MRI at Hopkins today and it went well. She was very brave and we made it through the day. The official report for the MRI from the pediatric radiologist and the pediatric surgeon will not be back until Monday. The preliminary report from a Hopkins Fellow was as follows...

the good news..

they do not think that it is a tumor

they do not think that it is in her chest cavity at all

they believe that it is a cystic hygroma

the bad news....

it is large in size

may be too large to remove

So now we wait until Monday for the official report and speak with the surgeon at Hopkins. In the meantime we have sent the CD of the MRI to the Vascular Anomalies Clinic at Children's Hospital in Boston for their opinion. Hopefully on Monday we will have an official diagnosis and what they are suggesting for treatment. If it is too large to remove, we will have to look at options for trying to shrink it in size and then hopefully options for removing it...I'm just trying to breath and take it minute by minute. I'm thankful that she made it through today and that is appears to not be a tumor. Keep her in your prayers...

Hospital Time/ Normal Time

So there is hospital time and then normal time. Hospital time means when you hear "right away" it means weeks/months, when you hear "I'll call you right back" it means in a few days. I can't stand it!!! Getting Lexi an appointment for an MRI has been tough. We have tried Children's in DC and Hopkins trying to see which place would get in her faster. Ms. Zoe at the doctors has worked hard and spoken with many rude people trying to help get Lexi an appointment. As of today she will have her MRI at Hopkins on Friday at 12 noon.

We have been in contact with a doctor at Children's Hospital in Boston who specializes in vascular anomalies which the cystic hygroma would be. He has been very kind and has agreed to begin reviewing her case without us making the trip. I have already sent a CD of her sonogram, pictures of her back and a medical report about her health. When the MRI is complete it will also be sent. He will then give a diagnosis and treatment plan. If we need to make the trip to Boston we will be on a plane right away without even thinking twice about it. As my pediatrician put it "you want someone who specializes in what is wrong with you."

Please say prayers for a good report...

Lexi and Hannah

So yesterday was not the day that we had hoped for when we got up in the morning. We got up early and headed to Hopkins with Lexi and Hannah. When we got there and checked in my mom and I went one direction with Lexi and Tom went with Hannah. I was trying so hard to stay positive and tell myself that it was going to be a good day.

Lexi

 

We met with the head pediatric surgeon at Hopkins. We liked him a lot and he was really good with Lexi who did not want to be there at all. The news was not as we had hoped. I was hoping that he was just going to give us a date for surgery and take the mass out and tell us she would be fine after recovering from surgery. Instead he said that there is sill a 15% chance that it is a tumor and a 85% chance that it is a cystic hygroma. He has requested a sedated MRI to make a final diagnosis. So now this is where we need lots of prayers. We need to pray that its

-not a tumor

-and that if it is a cystic hygroma that it is not in her chest cavity yet. ( they grow rapidly and if its in her chest cavity it would not be able to be removed)

After the MRI is done we will meet with the surgeon again to get a plan for how to go forward. It still could be surgery or some kind of injections into the mass to make it scar and try to get it to stop growing.

Please pray for good news soon!

HANNAH:

After finishing with Lexi I headed over to Hannah and Lexi went home with my mom. Hannah ate a gluten free oreo cookie and part of a gluten free waffle that both contained soy flour. That is what she was being tested for. She was coloring and happy when I got to her and told me how much she loved her waffle. Two hours and ten minutes after eating the waffle and cookie she started to have a reaction. She goes from fine to not fine without any warning. She started vomiting and was unresponsive. They started IV fluid, sugar and steroids quickly. It took her about two hours to respond to us and speak again. She vomited for about three plus hours. We spent most of the day at Hopkins with her on an IV. She is doing better today, just alittle crazy from the steroids. So this means no soy, nothing with soy in it, nothing processed with soy, nothing even processed on equipment with soy. For those of you who don't read labels, soy is in a lot! She is so tough and will bounce back probably quicker than mommy and daddy. We have made the decision with the help of her doctor to give her a break from food challenges. She has been going monthly since she was 20 months and its so hard on her and her body. She needs to start kindergarten and not worry about this. She will not go back until the summer of 2010.