Say What? It was just recently that I learned of the medical definition used for Growth Hormone Deficiency being referred to as Pituitary Dwarfism. I must say, we had never heard Eva's diagnosis referred to as this and seeing this on her documentation made me feel a bit uneasy. Therefore, this will be the last you hear me refer to her deficiency in this manner. This did however, open my eyes to the fact that her diagnosis is not just effecting her stature. In fact, what many of you may not know is the complications could arise with her organs as well. GHD impacts all aspects of growth; including heart and lung function as well as reproductive organs and learning delays. I would like to stress, COULD arise, as many children will go through life with no other issues, and there are many that will. We are in a state of uncertainty and will be for some time to come. Currently, Eva's physical (bone) age is 4.5-5 years old. It is so weird to think about her chronological age being 7.5 years old and yet her body is that of a 4.5-5year old. Below is a picture from our training session as Children's Hospital.
GH Therapy began in the beginning of January 2015. Steve, Eva and myself were trained by a endocrinologist nurse at Children's Hospital as we are responsible for mixing the solutions and giving the DAILY injections. We get quite a few questions about her injections so I hope to answer some of them here. We knew going into this, that the injections would be a daily routine for Eva that would last until after puberty at the soonest (again, it will all depend on other organ functions) We opted to approach the injections by having Eva play a large role in the training and taking on some of the responsibilities. This has become part of her everyday life and we felt that honesty was the best approach. Injections are to be given at consistent time between the hours of 6:00pm-8:00pm. The old saying stands true "you grow when you sleep" as GH is released during long hours of rest, giving her injections shortly before bed will be most beneficial when they work hand in hand with the little GH her body does release. She has been a trooper! She tends to have some burning some of the time, but overall she has taken them with no issues. When we first began, she had to look away and hold her breath when we gave the injections. Fast forward a month and she is now able to watch the entire process and when she is ready, the next step will be pushing the button ;)
We have experienced just one hiccup so far. Headaches can cause concern with children on GH therapy as the medication can cause fluid buildup around the brain. After two weeks, she started complaining of headaches and by three weeks they were coming more frequently as well as progressively getting worse. With this happening, we had to stop the injections for 2 days and then begin again with a lower dosage. We are in the middle of progressing back to the prescribed dosage, and hopefully in another two weeks we will be right where we left off.
You may be wondering if we have seen growth yet? We are happy to share with you that... YES! She has grown 1/2 inch in just over a month. To some, this may not be much, however for Eva, before GH therapy she was growing 1/2 per year.
Sunday, February 22, 2015
Sunday, February 15, 2015
Let Us Pause for an Introduction
We feel the proper place to kick-start our new blog is by introducing you to the three reasons we contemplated starting this journal. Each one of them has uniqueness that has impacted our family in ways that you will read about in later posts, however, here is a sneak peek into their not so "normal" life.
EVA- The Diva. Our little lady is the heart of our family. She may be little, but my goodness does she have the worlds biggest heart. She cares for others so deeply and is quite the emotional mess when she hears or sees something sad. (including the dog commercials) Eva's physical journey did not start at birth like Alex, however we always had a suspicion that something may not be quite right. At the age of one, failure to thrive was officially labeled on her medical chart. You see, every child is measured on a growth curve and is then compared to other children of that age. Eva, well, she had her own growth curve, it just happened to be under the charts, not necessarily on them. Of course a series of tests were done and countless vials of blood were taken over the course of a year. Needless to say the first year of testing came back "normal" and as a parent I put the ca-bosh on further testing. She was happy and healthy, just little, and until she showed me another reason to put her through this anguish, we were done. From that point her growth was monitored closely and her growth curve was really not a curve at all, more like a straight line with a tiny bit of incline from time to time. Her 7 yr old visit showed a change however, her pediatrician revealed the first decline in growth. This, along with several other factors was enough cause for concern so we moved forward with additional testing.We found that she is Growth Hormone Deficient, Eva's pituitary gland is not functioning "normal" and her body is not producing enough of the growth hormone it needs to grow on its own. Re-precaution of lower than "normal" GH can result in not only short stature, but things we didn't see, such as delayed organ function. Currently, we are in the process of getting her body on track with the help of GH Therapy and her excitement to finally grow is going to be quite the adventure!
VEDA- Where to begin with Veda? Our little wrecking ball,our free willed child,our pain in the rear end? Veda has been quite the handful since conception and we don't see this slowing down anytime soon, if ever. Veda is the baby who walked early, has NO fear, yells back, loves climbing on anything and everything and I am most certain 5 years have been lost from my life since we found out we were having another child. Don't let the angelic smile alter your perception, we challenge you all to spend one day with her and you will see what it is we are trying to convey. We are learning to embrace the free willed child and I must say, the things I would fret about before Veda have disappeared. She is teaching us a great deal about choosing our battles and even though she is quite the little stink-pot, we have been given this gift to remind us that we need to live life to its fullest. She will have no struggle with this, unless of course you define injury as a struggle. I see many of those in her future. Many!
ALEX- Our oldest has surprised us all, in more ways than one. After the initial shock that Steve and I would now be classified a statistic within the teen pregnancy spectrum, he outdid himself by giving us all the shock of our lives when he was born. To our surprise he was born without a lip, however the political and more appropriate name is Cleft Lip and Palate. In case you are not familiar with what this is exactly, I will give you a very brief synopsis. During gestation around 6 weeks , his upper lip, gum line and palate did not fuse together as it would in a "normal" fetus, in return leaving a large gap. Since birth Alex has undergone 8 surgeries, speech therapy beginning at age 2 with graduation taking place at age 13, he's also in the process of extensive orthodontia by a orthodontist specializing in CLP. With only 2 surgeries remaining, he will soon be closing the surgery chapter in his life. I personally believe due to his diagnosis and the reconstruction process, it has benefited him more than being a challenge. He has always been tough, respectful, takes ownership in his academics and is quite the well rounded kid as his athletics keep him occupied. If you see him around, don't be surprised if he keeps the conversation short and sweet. Only those who know Alex on a personal level, have heard him speak....as he is not a man of many words.
EVA- The Diva. Our little lady is the heart of our family. She may be little, but my goodness does she have the worlds biggest heart. She cares for others so deeply and is quite the emotional mess when she hears or sees something sad. (including the dog commercials) Eva's physical journey did not start at birth like Alex, however we always had a suspicion that something may not be quite right. At the age of one, failure to thrive was officially labeled on her medical chart. You see, every child is measured on a growth curve and is then compared to other children of that age. Eva, well, she had her own growth curve, it just happened to be under the charts, not necessarily on them. Of course a series of tests were done and countless vials of blood were taken over the course of a year. Needless to say the first year of testing came back "normal" and as a parent I put the ca-bosh on further testing. She was happy and healthy, just little, and until she showed me another reason to put her through this anguish, we were done. From that point her growth was monitored closely and her growth curve was really not a curve at all, more like a straight line with a tiny bit of incline from time to time. Her 7 yr old visit showed a change however, her pediatrician revealed the first decline in growth. This, along with several other factors was enough cause for concern so we moved forward with additional testing.We found that she is Growth Hormone Deficient, Eva's pituitary gland is not functioning "normal" and her body is not producing enough of the growth hormone it needs to grow on its own. Re-precaution of lower than "normal" GH can result in not only short stature, but things we didn't see, such as delayed organ function. Currently, we are in the process of getting her body on track with the help of GH Therapy and her excitement to finally grow is going to be quite the adventure!
VEDA- Where to begin with Veda? Our little wrecking ball,our free willed child,our pain in the rear end? Veda has been quite the handful since conception and we don't see this slowing down anytime soon, if ever. Veda is the baby who walked early, has NO fear, yells back, loves climbing on anything and everything and I am most certain 5 years have been lost from my life since we found out we were having another child. Don't let the angelic smile alter your perception, we challenge you all to spend one day with her and you will see what it is we are trying to convey. We are learning to embrace the free willed child and I must say, the things I would fret about before Veda have disappeared. She is teaching us a great deal about choosing our battles and even though she is quite the little stink-pot, we have been given this gift to remind us that we need to live life to its fullest. She will have no struggle with this, unless of course you define injury as a struggle. I see many of those in her future. Many!
Saturday, February 14, 2015
Meet The Fam
Congratulations! You somehow have found your way to
our Ziccarelli blog, maybe you know us personally or you're an acquaintance
perhaps. It's even possible we don't know one another, but one thing we do know
is that you will have more than a glimpse into our chaotic journey. Silly me,
for those of you who don't know us, we are high school sweethearts who started
our journey together at the age of 16. We welcomed our first born when we were
practically babies ourselves, fast forward 16 years and here we are, a family
of 5! You may have overlooked our blog name and if that is the case we would
like to make mention, if you are looking for a "normal" family blog,
you will need to look elsewhere. From health challenges to a difference in
point of views, we will leave you laughing and sometimes crying. We will
present you with current updates and you better believe we will be throwing it
way back to 1998 when our journey first began. Cuddle up...Get cozy...and keep in mind, the purpose for this blog will remind us all... Normal is overrated! ~ Steve
and Erica Ziccarelli ~
The Ziccarellis- Steve, Erica, Alex, Eva and Veda
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