Birthdays, Parenting and Memories

This is a very last minute post, but I had a few things on my mind, about kids birthdays, parenting, and making memories together. So here it goes... Today I was just thinking of how fast my children are growing and some of the pictures on my blog are not all updated, my oldest so nicely pointed that out to me last time I wrote. So since they have all turned another year older, I thought I would share some of the celebration with you, they are all 10 and above now, double digits, where has the time gone? Though the birthdays have come on gone, I am still celebrating this time we still have them at home. Our minds (my husband and I that is) try to wrap around the thought of a home with just the two of us, (and Meggie of course) and I have to say, that's not always an easy thought. Parenting is so a part of us, it's very difficult imagining it any other way. Not saying that we will not be their parents when they are out on their own, but it will just change the dynamics a bit. From the time our children were born, we knew we would be preparing them every step of the way, through all the stages and ages they pass through, I have to say we enjoyed each stage, and never felt anxious at those time.

Now jumping ahead to the present, it's not an anxiousness I feel, rather the goals we have made as parents in the raising of our children; such as knowing how to care for a household, single, married, children, whatever the case maybe. Being financially responsible, making good sound decisions, being a good employee or employer, being able to pick the right spouse, job, education, church, friends, and on and on. I am reviewing in my mind what is it we need to equip our children with, so when they leave home, they are physically, mentally, emotionally and spiritually prepared to handle life on their own. We are so blessed as parents to have this opportunity to raise our children in a way that they will be outstanding individuals, who will have a great (eternal)impact on society. There is truly a sense of accomplishment, and joy to see your children putting into practice some of the values, morals, and responsibilities you have worked on repeatedly over the years.

I truly want to be able to look back when my husband and I get older and know that parenting was the most important job we did while our children were growing up. It will be rewarding to both of us and most of all it will be a reflection of our love for our children and for our Heavenly Father. My life has been filled with good examples of parents/grandparents, and what parenting should look like.

Looking back at the wonderful memories I have of my grandparents, the unconditional love they had for us grandchildren, was amazing. I was fortunate enough to have a good relationship with my grandparents, as well as my parents, which just reinforced the morals,values, responsibilities, and spiritually training that equipped me to be the parent I need to be. Notice I did not mention in any way shape or form perfect parenting, it makes me feel uncomfortable when people even mention (or insinuate) me and the word perfect in the same sentence, I am just showing my gratitude for my up bring. I know my husband and I will feel honored if our children feel this same way as they grow up.






Homemade cake and (my aunt's) almond frosting are the greatest!


Now when we are celebrating birthdays, we fully enjoyed each one, appreciating them for the special individuals they are to us; the food was great, we usually let them choose the meal; the cake was yummy! The gifts were fun (and within budget), and the time together was priceless! The smiles on the kids faces and the laughter we shared will leave long lasting memories hopefully for all of us. We took several pictures, and I will share a few, I also attempted to make my first slide show in honor of Meggie's 10th birthday, that was quite fun I must say. As other important birthdays and events arise, I hope to have special plans to make even more special memories for the kids that they can look back on, always remembering what made it so great is we did these things together.







Celebrating my oldest daughter's birthday was so fun, though it really gets us thinking of how fast the time is going. We usually sit around and spend some time reminiscing their childhood days, maybe watch an old video of the kids and we almost always end up laughing. The memories we have made will linger for a long time to come.







By the time my son's birthday rolled around, we had some mild illnesses going on in the family, but enough to postpone the celebrating for his big day. It was a good thing he was not sick and could have some fun things planned with friends and have things going on at school. As you can tell, the younger people in the family are very rapidly gaining (height wise) on the older people. Sorry Meggie your height does not come rapidly for you, but your cuteness more than makes up for your height.






The last thing I am going to end with is some lyrics I wrote for Andrea, as I was reflecting how fast the time goes while we are watching our children grow, and thinking about all the hopes and dreams we have for them. It was a goal of mine to have a song for each of them from me.


Rock-a-Bye My Baby


(chorus) Rock-a-bye my baby as you drift to sleep,
with his angels watching you, we'll have some peace.
Daylights coming night will quickly pass....rock-a-bye my baby to sleep.

(v1) We wish that times like these would last and last,
The kids are growing and time is going fast,
I watch you as you go to run and play, may angels watch you day by day.

(v2) Before I know you're going off to school,
The teacher's smiling and the children are too,
Mothers say good-bye, kids say.....mommy don't cry, rock-a-bye my baby with me.

(chorus)

(v3) The school bell rings, and now the day is done,
You've learned great thing and even had some fun,
Across the stage you'll walk in cap and gown, as angels sing and dance around.

(v4) College comes and goes your working now.
You're volunteering in spare time somehow;
Then the phone rings....Dad,....there's this guy...I want you to meet,
rock-a-bye my baby with me.

(chorus)

(v5) Wedding bells are ringing loud and clear,
I see your veil on, smile, and I shed a tear.
Vows are said, and then you kneel to pray,God bless you on your wedding day.

(v6) Sharing time with you is rare, but, precious now,
Memories fill my mind, of your childhood days I recall,
You're having children of your own right now, and singing...
rock-a-bye my baby with me.

(chorus) Rock-a-bye my baby as you drift to sleep,
with his angels watching you, we'll have some peace.
Daylights coming night will quickly pass....
rock-a-bye my baby to sleep.

Patience for the Journey

"There is no road to long to the man who advances deliberately and without undue haste; there are no honors too distant to the man who prepares himself for them with patience."

~ Jean De La Bruyere









Many of our friends and family will be busy getting ready to pack up over the next two weeks and head out on the long awaited spring break! The children and teens will be off of school, and you and your spouses (for those who are married) are more than ready for some time off and maybe even some warmer weather. You know how long you and your family have been waiting and planning and working for this time; and now it's here, aah.... yes, that sweet vacation, what a beautiful thing!








Some of you may have been researching your vacation destination for quite sometime, online, through a travel agency, or it maybe a place you go to each year. No matter how you made the decision where to go, it took some planning or preparation on your part to a certain degree.


So for those of you taking a road trip, you get the car packed, everyone is ready, and one last look at the check list to make sure you remembered everything, and with the map in hand, your off . Now we both know you can bring games, movies, food, and many other things to occupy the kids; but, we all know sooner or later it's bound to happen, the questions begin. And you know it's coming, then it's the big question......"Are we there yet?" Oh, we only hope that question does not start to soon into the trip, because depending on their age you know how often the question comes up. So map in hand we may try to show them, or explain to them where we are and where we need to go, before we arrive. It's only our hope, that we get to our destination as planned, and in a timely manner, though you and I both know there's always the chance of running into traffic jams for for various reasons, or maybe even detours, oh dread. This is the time when the question is repeated, right in the middle of the delay, "Are we almost there ?" As you are trying to explain the reason for the unexpected delays, oh no, here comes the next question, "How much longer?" This can be difficult to answer when you have run into some unanticipated bumps in the road, not to mention, things are not going according to the plan. At this point, all you feel you can do is to be as reassuring as possible.






Is this a familiar scenario to any other parents out there? Well, at least we can laugh about it now, as our children get older I hope.




Life's Journey


In the last several weeks I have noticed many situations on the news, in the USA, and in our area, where there are some circumstances where many adult have made plans in their work, or in their family life and for some reason or another, it seems as though there has been a road block, a detour, or a traffic jam so to speak.



"Never think God's delays are God's denials. Hold on; Hold fast; Hold out. Patience is genius."

~ George-Louis Leclerc



I have observed this does not resonate very well with us as adults, it's not just children who get impatient. As adults, we often look at where we were, where we are, and where we are going in life, and if things don't go as planned, it can be a bit frustrating to us. For those of us who pray along the way, we may even ask our Heavenly Father, "Are we there yet?" and if not, "How long before we get there?" hoping we get the answer we are wishing for. Along our journey, we may lack the patience and persistence needed to complete our travels.



The one thing I can tell you is we never stay in the same place forever, situations change, kids grow up, you may change jobs or homes or other things. One thing remains the same the love and the faithfulness the Heavenly Father offers all along the journey, without fail.





The next time you travel with your family, I hope this story comes to mind, as our children ask these questions, let us remember how we as adults still ask these question in our life's journey. My hope is that we can smile next time we answer our children, ......and enjoy the journey!



"Patience is the support of weakness. impatience is the ruin of strength."

~ Charles Caleb Coulton

Helpful Links for SOD ONH

This blog is kind of a continuation of the previous one I did the other day, sorry this maybe alittle boring to some, hang in there with me. I am hoping to suggest some valuable ideas, information, and the links of a couple I have. Starting from the beginning, when our children are still babies, you will want to have the contact names for your local health department, the county where I am in they call it Health and Human Services. They will be able to direct you to a Birth to 3 Program in your county, they will also help you in the area of funding if your child meets the state requirements. Most counties have a Family Support Program, Katie Beckett Program, CLTS Waivers, and some other programs that will help for your baby/child again depending on age and if the meet the eligibility requirements. Make sure you keep informed on these things for the sake of your child, some of these children will need a lifetime of special care and services. We need to advocate for these kiddos!

One valuable contact is CSHCN (Children with Special Health Care Needs), if you google this, you should be able to find the contact for your area (in Wisconsin) they will be able to help you with finding different kinds of information. They also have a whole library of books,etc you can borrow from. Children's Hospital of Wisconsin may also be a good link to have, I believe it is http://www.chw.com/. There is also The Center for the Blind and Visually Impaired, you can google them and find a local contact for your area, they have been beneficial in testing Meggie's vision and making suggestions for how to work on improving her vision. Focus Families has been a good resource on finding out more about ONH / SOD ONH, you can visit their site at http://www.focusfamilies.org/, Dr. Borchart and his staff have studied ONH /SOD ONH over the years, and have many informative articles and studies posted on the site http://www.onesmallvoicefoundation.com/, Family Voices of Wisconsin is a resource you can use to find out about meetings and trainings, as well as if you need an advocate for your child, http://www.fvofwi.org/. ONH Consulting is run by Christopher Sabine, the President and Founder, who was born with ONH himself, and can consult with you or offer his services for IEP meetings, and school related issues, http://www.onhconsulting.com/ . The Child Neurology Foundation is a newer site to me, but very interesting to me, http://www.childneurologfoundation.org/.

There is just another three websites I would like to share that maybe fun (and informative), the first one is Possibility Playground in Port Washington, if you have not been there, this is a must for your children. This all inclusive playground is sure to bring a smile to your children's faces, http://www.posibilityplayground.org/. PALS stands for Parents as Leaders, this is a training group parents of children with special needs children can learn and grow, and become a better advocate for your child, www.waisman.wisc.edu/pals, and the last one is actually the magazine, Exceptional Parent, this is very informative for parents, about multiple topics, http://www.eparent.com/

I hope some of you have found this helpful, together we can learn and help make things better for more families of children with special needs.

Updates, Apologies, and New Families

Dear Friends,



How do I start this post? It has been so looonnnggg since I have been in touch,(my apologies) I would like to start where I left off, but there is some catching up to do. First things first as I always say, once the holidays were over, the schedule looked so good, or so I thought. That past several months have been a time of learning for me (good and bad), the companies we at times put our trust in do not always serve us well. Making a long story short, I have been in a battle with my insurance company, and now I have come to a point of having to investigate how to bring an unpaid claim $$$ back into appeals. I am just saying I wish they would just stand behind what they said they would do, is it to much to ask these people we consider to be professional to be honest? The amount of time trying to work on this has been to much! Ok, you get the point.



It's not only the unexpected interruptions in life, but, even the expected ones that throw us off course now and then. Our Meggie has gone through approximately six weeks of seizures(more of the grand mals as of late), bed wetting, headaches, and just feeling plain fussy or off, not to mention wiped out at times after the seizures. this leaves us with questions again, is she growing? Does she have a UTI? Is she fighting any viruses? Are there any hormones that are off? What changes maybe around the corner, or is it just a round of severe seizures? Well, we did check off the possibility of a UTI with a trip to her pediatrician, later this week we will investigate more at the Endocrinology Dept. at Children's Hospital. There they may check some labs, diabetes screening, cortisol levels, as well as some other hormones, and maybe her IGF1(insulin-like growth factor) and HGH (human growth hormone), for her growth, and maybe a bone density test(to check the strength of her bones).



The seizures have been one issue, and soon it's time for her scoliosis check up, and x-rays, oh and did I mention her asthma check up, these are a few of the up and coming appointments. This is my child who definitely keeps me busy, you would not want to let your mother get board, would you. The appointments and information can become overwhelming at times, but as these children with SOD ONH (Septo Optic Dysplagia Optic Nerve Hypoplagia or ONH) get older believe it or not some of these things become routine for them and us. We all hope to get to this more peaceful routine feel sooner than later, and I can not blame anyone for that.







TO NEW PARENTS AND FAMILIES JUST LEARNING ABOUT SOD ONH or ONH




For any new comers to my blog I will try to discuss more clearly what occurred as far as lab tests, ultra sounds, CTs ect. Because there had been fluid in the ventricles of (Meggie's) brain detected on ultrasound (already at 19wks.), my husband and I were alerted to the fact there was something going on with our unborn baby. At that time I saw a Perineonatologist, who did more extensive ultrasounds, and followed me through the rest of my pregnancy as well as my
OB GYN. One of the best recommendations to me was that we find a Pediatric Neurologist for the baby, and speak to him even before the baby was born. This was recommended by our Family Dr. and that was beneficial to have him on board from the beginning, we have had the same neurologist ever since. Your neurologist will want to do a baseline CT of your child, and then will schedule follow ups as needed. Once we learned what parts of the brain were affected and or missing, we were able to learn more about how this may affect development. If your child experiences seizures, your neurologist may also schedule for them to have an EEG , which is painless, as is the CT.



The other specialists you will need to see will be a Endocrinologist, who will be able to check on the hormone levels your child will needs to have checked on at least a yearly basis, as well as their growth levels, HGH and possibly IGF1, an Opthamalogist will assist you in checking the structure of the eyes and nerves behind the eyes as well as vision testing, this can be hard, especially if your child does not speak. One of the amazing things for us was Meggie has learned to use her vision better, even though her chart says light perception, we have been working on improving the use of that vision, don't be discouraged parents!



As far as doctors go, our children may not need all the same services, it really depends on what needs your child has, and how they develop over time. Meggie for example has other issues over and above the SOD ONH, such as the scoliosis, so we see an Ortho dr. on a ongoing basis, as well as her Gastroenterologist for her G-tube check ups and diet, we also see a dietician at the same time. When Meggie got alittle older we also started to see a Psyiatrist for her equipment needs, and to have him keep tabs on her tightening muscle situation in her hip and hamstrings, this has also been a great help.



This is alot of information to absorb, but please keep in mind this happens over time, not just days or weeks, the doctors and nurses have been a great help to our family, we sooo appreciate them! Just a few other helpful pointers for you, if you have not contacted your local birth to 3 program facilitator, please, please do so sooner that later. The sooner we can get our children in for their first evaluation, the better! They will be able to recommend the appropriate therapies for your child, and your county caseworker will be able to give you information about available funding for your child.



There are may resources out there, I have listed a few at the bottom of this page, NACD, The Magic Foundation, One Small Voice, just to name a few, please check these out, there will be a lot of useful information to you for the days ahead with you child (I will try to add more in the near future). And lastly, I would just like to say there is a wide range of mild to severe when it comes to SOD ONH, I was very amazed to find out about many individuals leading happy lives despite of any challenges. Even with Meggie being more towards the severe end, we have enjoyed having her as part of our family, and cannot imagine life without her. The love and the warmth, and the contagious giggles she adds to the family are invaluable not to mention the life lessons along the way.



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