Spending time with other Batten families brings a level of
comfort and understanding that we can’t get anyplace else. We have people
around us that know ABOUT Jacob but don’t really KNOW him or what it is like
raising a Batten child. There are no strange looks or stares. It is pure acceptance.
This was a chance for me to break out of “isolation” for a few days. I could
sit and listen to other parents and just nod my head because many of their
words and feelings were mine. I can easily say having Jacob has changed my life
for the better and I certainly can’t imagine my life without him. However, the care
giving part is exhausting. It is ongoing. Not just physically but emotionally
and mentally as well. One parent spoke and put it clearly that this is our
normal. This is our Batten normal. I can say that it is hard watching other
families just jump in the car and go places. I joke when we go to people’s houses
for a few hours as it looks like we just moved in with the stuff we have to
bring. Each trip out the door has to be thought about so we have what Jacob
needs. “Will he be eating?” He needs his special drink, cup and straws. “Will
it be hot?” He needs his cooling vest which must be prepped in advance. “Will
he need a feeding or meds?” We gather the tube feeding supplies, syringes and
meds. Diapers and wipes go along too. I am thankful for the respite house but
the prep that goes into it lengthy and as I pack, I wonder if it is worth it. I
have lost a sense of being Chris. I am not one to ask for help but at the same
time, I am pushing myself over the edge trying to cope with certain things. You
see, I want to make my life and our home look like I have it together. I want
to appear as if I am like any other mom because I desperately want to fit in.
Honestly, watching TV and even being out can easily depress me as I watch
girlfriends talk and spend time together. I miss that. I want that. So being at
this conference even for a few days gave me a chance to breathe. A chance to
rethink what I am doing and what I need to do. I need to find some way to get
some of the stress out of me!

Some of the sessions at the conference focused on research.
There was one Dr. I was interested in listening to as I read that he works on
unknown NCL’s (Batten). Lance had told me I need to speak to this Dr. as well.
As I sat and listened, words became very familiar. I stepped out and ran to our
hotel room to get a binder of Jacob’s that I had decided to bring this time. As
I listened, I was flipping through the pages seeing what he was talking about
and showing on the slides. I introduced myself afterwards and he said he has
already heard a lot about Jacob. He and I started going through the binder and
immediately he started pointing things out. He has two other cases to compare
Jacob with. He was surprised at all the abnormal mitochondria along with seeing
inclusions for Batten disease. He said the abnormal mitochondria he saw are
seen in later stages. He suggested he go back on the “mito” cocktail (coQ10)
that he was briefly on before when we were in the testing phase for mito. He
was glad to meet Jacob and is very interested in working with him. This Dr. is
located in Boston. I spoke to Lance and he is hopeful this will lead us to what
form of Batten Jacob has. He still refers to it as “Jacob’s Batten.” We have
been searching for over three years. I am trying not to get my hopes up too
high since I know Jacob has stumped countless Doctors. This one, however, seems
to see the big picture and putting things together. We have already started
emails and sent a lot of info. He says he “now has 3 molecularly undefined
patients with a mitochondrial/NCL overlap syndrome”. He said there is “accumulating
evidence of mitochondrial/NCL overlap (in both mouse and human cell culture
models)” which he wants Jacob’s Neuro to know. I have changed Jacob’s October
appointment to August 9^th with his Neuro and I have already
contacted radiology to get scans of his brain MRI’s on a disk which is ready to
be picked up! I am starting to have more hope again. We already know Jacob has
something progressive but it has been a terrible helpless feeling not having
any direction to go in to try and help him. This is not the answer we want by
any means. It is the worst when speaking in terms of what will happen to him
BUT it could lead to somehow someway helping him. Right now, Jacob’s speech is really
bad. He is struggling more and more to get words out. Tonight, he started
crying. He told me he wants his voice back. He knows and it hurts so much that
he knows. I just held him and tried to tell him it’s OK. It’s not OK. This has
been what seems like the longest stretch of him having difficulty getting the
first words out and at times seems like it is getting worse. This also brings
his level of frustration higher. Maybe, just maybe, this Dr. can help. I am
going to believe he will!

As always, Jacob manages to get people wrapped around his
finger. I have pictures from the last conference with him on the dance floor
surrounded by girls and everyone was so happy. He hooked himself on a group of
research students that work for one of the leading NCL researchers. It did not
take long before he had them in the hall playing duck duck goose and crawling
around like farm animals and playing aquarium! Of course he knew one of them
was going to take a blood sample soon which made him even happier. They learned
about his love for this sort of thing. I loved seeing the look on the Dr.’s
face when he heard me tell Jacob that he wants his blood and Jacob throwing his
fists into the air saying “yesssss” as if his team just had the winning goal!
Jacob never ceases to amaze me. He is an awesome kid!

Despite the things we have had to deal with, there are good things that have come from school this year. I keep many papers throughout the year and hang them on the wall leading to the basement. I can see the progress he has made in his letters and drawings. He made improvements in speech as well and has learned to identify more things like comparing words (up/down, over/under as example) and putting things into groups like naming farm animals. They sound like simple things but they are huge for him! I am very proud of his efforts. He tries hard. He even learned how to spell zoo! Now he can spell Jacob Geer, mom and zoo! He can write his numbers to 12 too! He tries to write the alphabet but still gets them mixed up and skips some. Even if he has a picture of the alphabet, it is difficult to follow along with that many letters but he does not give up and we give him praise for his effort! We did have his MET testing and meeting. It was a detailed evaluation in areas of gross and fine motor, speech, academic and psychological. It is hard seeing all of that on paper since it tells us where he is at age level wise. They always include his good qualities like how sweet he is and a hard worker. Not easy to hear he is 4 and even 6 years behind in many areas. No parent likes to see their child struggle. We will not give up. He is still very capable of learning!

We did go to U of M for extensive testing for his eyes and were pleased to hear the Dr. tell us Jacob’s vision is still intact. It was a long day and Jacob did very well for all he was put through. I left there feeling like we bought more time. We are so thankful for this news. There are subtle things but nothing that alerts us that things will change soon.

I stepped out of my comfort zone and let someone convince me to have Jacob go to a respite house. I had been very hesitant but she assured me he would do fine so I took Jacob and met her at this house to find out more about it. I then took Jacob back for staff training for his tube feeds, meds, oral eating and personal care. We did a trial one night stay a few weeks ago and he seemed to love it. He said he missed his friends (they can have up to 6 kids) and wanted to go back which made me feel better. I had coached Nick’s Odyssey of the Mind team this year and we made it to world finals in Maryland so our plan was to have Jacob go to this house for 2 nights while I was gone. Rob was unable to go with Nick and I which made me feel better that he was close if Jacob needed him. Jacob did very well again and still asks to go back and has added his “new house” when he gives thanks in his prayers. Very sweet! We have eleven more nights between now and October 1st if we choose to use them. It is a very weird feeling having him go there. There is so much to do for his routine and care and seeing the counter without his meds is an empty feeling. I miss him so much too!

Jacob’s behavior is still difficult to control. Some days I just want to crawl into a corner and cry because I don’t know what else to do. I hate this disease! I blame the disease for it all but that is not easy to do when things are bad for hours and hours. We weaned him off one of his behavior meds to a different one in Jan. but we did not get any improvement. His specialist had surgery and was not working for a while but he is back now and we have an appointment soon. We need to do something or this is going to be a very long summer. Our hours with Katie are being reduced from 32 a week to 14.5 soon due to budget issues. This is going to be very difficult to adjust to since we have had her working this many hours for a while now. I enjoyed the adult contact and another person who understands our lifestyle. I am going to miss having someone to talk to outside of the kids! This is where I wish I had a hobby, a friend or someplace to go on a regular basis so I can get a break. I may not be in one piece by the time school starts! Please pray I can have the strength and grace to manage. Please pray a med change will help!

I am very excited that we will be having Jacob’s birthmother, Christy, visit again! She was here two summers ago for the first time and we have not seen her since. She will be flying in from FL on the 18th and staying with us for 8 days! People ask how much Jacob understands about adoption. He does not have the cognitive ability to really “get it”. We tell him he came from Christy’s tummy and that she gave him to us. We still see our relationship with his bio family as a good thing for everyone. I love being able to share Jacob with her when I get the chance and it helps that Jacob has another family that love him very much. Glad I have a new camera as I know we will be taking a lot of pictures and building happy memories!
Overall, Jacob is doing well. It was three years ago on April 15th that we were given the diagnosis of Batten Disease. It was a day we heard that Jacob would become blind and unable to walk within a year. It still remains a mystery why the disease is not progressing faster. We are thankful for each and every day and keep praying for a cure. Batten Disease took the lives of two young children recently (from Australia and Spain) and it is heartbreaking. They were so young. We can’t lose hope.

Seems like there is so much more to tell but it is getting late! I hope everyone is doing well! Thanks for checking in!

God Bless
Chris

Today we are celebrating Jacob and as always, we are forever greatful for his birthfamily for choosing us as his parents. It’s hard to believe he is eight already but then there are times when I look back and think about how much this child has been through in his eight young years and think it must be longer. Jacob is such an amazing boy. I know I say that often but it is so true. He has faced a lot of challenges, far more than the average child, and fights it all head on. I admire how much strength and courage he has. I love seeing how much he has affected the lives of others and how he has formed relationships with some that are so special. Rob took him for bloodwork the other day and the lab techs just adore him. The person that was drawing Jacob’s blood had not met him before but said he had heard all about him! He had totally made everyone’s day a better one! Today in church, he was swooped up by a woman who loves him so much. She made sure he sat by her (which he never has before). The church was packed and Sophia was not feeling the best so I sat in the back with her. At first I felt sad that I was not sitting with him especially on his birthday but then I thought to myself, he is surrounded by those that love him and that was OK. It was beautiful to see. Jacob makes people smile and laugh and that is a special gift to have. 
As we waited for Jacob’s party to start, I had broke down and started to cry. Not sure if it was because we have had a house full of people with what seemed to be an endless party since Thursday and being tired or the emotions that I have surrounding Jacob’s birthday. Perhaps a bit of both. Rob’s sister and her family had stayed with us since Wed. night and left this morning, we had a house full for Thanksgiving (my nearly 27 lb turkey was very tasty!), my brother and his family stayed all day on Friday with more family time on Saturday. Top it off with Jacob’s party and that leaves my head spinning…more than usual! Part of me was thinking about the gifts Jacob would be getting. I wanted him to have typical eight year old boy things but he can’t. Not physically and not mentally. Rob reminded me that Jacob was getting what was right just for him. He was right but still hurts sometimes when I see him looking at some of the other toys and asking for them knowing he will never be able to use them. Jacob’s body is getting older but his mind is not. He is perpetually going to stay a young child. When I think about that, I think about the Toys R Us saying “I don’t want to grow up, I’m a Toys R Us kid”. Despite his behaviors which are mostly out of his control, he is happy in his own little world playing with simple things. He will never have to worry about all the bad news in the world around him. He does not have to worry about his grades at school or finding a job. Is that really a bad thing aside from the obvious of a child with a progressive illness? I wish I did not hear most of what I do with all the bad news on TV, newspapers….So, his life is simple and just right for him. This is part of God’s perfect plan for him.
 I do wish he could tell me about his days at school and what he does. He will say things but I know they are not correct. Sometimes I ask who is teacher and classmates are and he will name his previous teacher and classmates (part of the short term memory loss). Right now one of his hands is a giant bruise. I mean over 1/2 of it is bruised, mostly on his palm including some fingers and on the top of his hand, and looks horrible. He can’t tell me what he did. Makes me feel like I am missing part of his life.
People often ask me how I do what I do in reference to taking care of Jacob. The answer is simple. I believe in life and God’s mercy. Taking care of Jacob is often challenging but it’s rewards are great. I am Blessed to have him these past eight years and I am thankful for each and every day. I am thankful that God’s love is greater than anything and I am comforted by the love that I see He has for Jacob through others.
Jacob, you are one totally awesome super special child and I am proud to be your mother. You bring light where there is darkness and joy when there is sadness. You have great purpose in life and I know you will continue to touch the lives of others in a positive way. I pray God will continue to give you the courage and strength to keep on fighting this disease. I wish for you to have many more birthdays and look forward to celebrating each and every one of them. I love you to infinity and beyond!

I hope that all of you have a Blessed Thanksgiving. Please pray for Jacob as we celebrate his 8th birthday on Sunday. He is so excited and looking forward to his party!

God Bless,
Chris

Jacob has a new teacher, para pro (teacher aide) and school nurse. There are 9 kids in his class and many are new to him. It’s always fun to go to his school and see how much of an impact he has made there! He certainly knows how to charm everyone and it shows! Wish I could explain what he does! It is hillarious! Makes me feel good and comfortable with having him there. You can see how much they truly care about him. He still gets PT, OT and ST with the same therapists as last year which is great because they have built a relationship and can pick up where they left off. 

At Jacob’s previous Neuro appointment, the Dr. wanted Jacob to have a psychological eval to see where he is at. We made an appointment to see the specialist and see if Jacob would be able to take the test. We went over our concerns and what we hoped to get out of the testing. Jacob’s abilities scatter all over the place. I wanted to know what levels he was at so I could try and work with him at the appropriate ages. Was there any part of him that acted like a typical 7 year old? Jacob had the same type of testing back in 2008 when he was 5 years and 3months old (they are very specific in ages on these tests). The Dr. wanted a copy of those results to compare. Jacob had the testing (unfortunately not covered by insurance) and last month, I went back in to get the results. I was not prepared to hear all that the Dr. told me. Between the two tests, it showed “significant decline” in cognitive skills. The Dr. knew the person who gave the previous test and knows both tests are very accurate. He did say I could get another opinion which would repeat the test but it would be the same test. He spent about 1 1/2 hrs with me going over everything. He showed me some of the testing and answers Jacob gave. He went over the notes from the person who administered the test. Jacob was in the room for part of this discussion but thankfully katie (our CLS worker) was there and took him to the waiting room to play. The Dr. felt really bad and I was fighting back tears. Each catagory gave an age that Jacob functioned at. He went all the way back to age 2 years 1 month old to the highest at 4.5 years. Most of his skills fell back to the mid 2 year-3 year old level. He will be 8 next month. His previous test had him functioning at 3 years 10 months. He was unable to do most of those same tasks which he should have gained the ability to do. Because he is much older now, it affects where he is at. A lot of his issues stem from processing. His short term memory is suffering. As the Dr. went over things, I found myself shaking my head in agreement. I knew…denial perhaps? After all, I want to try and focus on all the can do’s. I told the Dr. that I see a child who is still able to learn. He explained that even as an eldery person loses memory, they can still learn and even hold on to some skills that they were strong in (ie; crosswords puzzles). Jacob has learned more words because of his age and has added them to his vocabulary but overall, still very far behind. He easily gets stuck on subjects and it is near impossible to redirect. The Dr. gave a lot of suggestions. What does this mean? We have a neuro appointment on Nov. 2nd so I am interested to hear what he has to say. I asked if it is possible that his brain atrophy is worse as his most recent MRI (about 1 1/2 years ago) was his first abnormal one showing mild white matter loss. Of course he is not a medical Dr. in that catagory so he obviously could not answer but said it is very possible given the diagnosis. We now have to add a visual therapist to his team at school and hope she will be able to help with all of his processing issues. I already spoke to the teacher and we need to work on simplifying even more. He has a lot of obsessive behaviors that mix into all of this too. We are in the process of setting up a new IEP to make all the adjustments necessary. They have started implimenting some things but we need written out detail and are waiting for the Dr.’s summary report.

Jacob had an appointment at the GI office (goes yearly unless needed more often). I was not even thinking his coughing/choking that he continues to do would be something to discuss. The swallow study he had a year ago gave him full clearance to eat/drink. When she brought it up, I told her how I was not happy with the study and felt it was not accurate. She wanted to order him another swallow study at a different location (where he has had them in the past) as she said it is a full study. He had that test done and sadly, now has restrictions for eating/drinking. Liquids are pooling behind the flap that covers the airway so when that flap opens back up after swallowing, things are going down over an open airway thus posing a risk. As far as drinking goes, he is now only approved to drink from a double barrel coffee stirrer with a chin tuck. He barely drinks a thing during the day so thickening things are not an option. He loves to eat soup (one of his few favorites) but now we have to put crackers in it, soak up some soup and drain the liquid. Same if he wanted milk on his cereal. Certain foods are to be avoided due to the natural amount of liquid and things like ice cream and popsicles are on the “no” list because they are solid turn to liquid. Jacob takes 3-4 swallows to get down a small amount of food and we take only one. Again, that poses a risk. they want his food to alternate. If he has different foods, then alternate textures or different temp foods to give him reminders there is still something there. He needs reminders to swallow. This is devestating because a huge part of Jacob’s bad behaviors stem from food. It is already a major battle and has a lot of obsessive behavior which is the reason he is on Zoloft. He still has his tube feeds as he does not eat/drink enough to survive. As hard as this is, I am so thankful that he IS able to eat some oraly. He has battled eating since before his tube was placed at 20 months old. He has been in and out of feeding therapy including a 9 week intense feeding program out of state. They also want him back in feeding therapy for 8 wks to see if we can improve some strength and skills. I went to his school right away and they have the strict instructions in place. His speech therapist will be able to give additional help with this while there. His teacher is doing awesome at sitting with him during lunch and talking him through. Jacob is a frequent member of the “clean plate club” because of it! By the way, finding double barrel coffee stirrers is not easy! Did you know most places don’t even sell any coffee stirrers anymore? They have changed and the new style was a fail in the test! Need to order online!

Jacob’s behaviors have not improved. I had hoped things would calm down a little with him being settled into his school routine. One problem is his transition from school to home. The anger and rages are on a high right now. School is very predictable with routine. At home, we have 3 other children (one comes home nearly the same time) and things are not as predictable. He does have his routine of getting his shoes off, changing his diaper and getting water through his G-tube. He also demands a snack (since Nick does) and the battle begins! Some days are so bad I just want to go into the closet and cry. I am at a loss on what to do. We have Katie here 4 days a week from the time he gets off the bus til bedtime and it is still bad. I love him so much and I know it’s not his fault but that only makes it a little easier to get through. I am thankful to get to the end of the day in one piece!

Sorry for the long update! As I said, it’s been a while!

Chris

This past Saturday, my Mom’s sister, Marilyn passed away. My heart aches for the pain my Mother is in.  I am so thankful she and her two brothers had the chance to see her one last time last week. Today was her funeral and I was faced with having more to talk about with Jacob and Sophia….the word “death”. Hard for them to comprehend at their age and yet I could see a somber look on their faces. Jacob even tried to wipe the tears away from my mom’s face. That leads me to think even more. Does he know more than I think he does? Overall, I don’t think he really does know what is to come. I had a chance to see and talk to many of my cousins today. My aunt raised 7 children, most of whom I had not seen in countless years. Hearing how old some of their kids are made me feel so old (thinking old as I turn 39 this Sunday)! I also had the opportunity to share a bit more about Jacob. What they heard was that he is a child with a rare disease with no cure….terminal. What they saw was a different story and one I prefer to look at. They saw a little boy LIVING. He was just a kid. One smiling, laughing and playing with his cousins. When I think about what the Dr.’s had said over two years ago and what I see now are so different. Over two years ago, we were told Jacob would soon become blind and lose his ability to walk. That “soon” came and went. How or why? Only God knows the purpose. Perhaps God has made him a child so willing to endure all that he has to help others. Jacob has embraced the surgeries and testing in a way I can’t even begin to imagine. He is one tough kid who can smile all through having blood drawn despite the tech having a hard time finding the vein. I have said before how I loved a quote from another Batten parent that their child was not dying from this disease but living with it. I admit there are days when that is hard to believe but that is so true in the overall picture. Although tests have proven to show changes that would be against him, he somehow manages to show us something new…in a good way. He is still a “can do” child even though he can easily call it quits. Jacob, Sophia and Joshua were working on puzzles today. Sophia whips through 63 piece puzzles with ease and Jacob sees that. He was struggling with what would be a simple puzzle that had less than a dozen pieces. He said he could not do it but I knew he could! He just needed more time and encouragement but I could see his frustration. He did finish and without me touching it! It is sad to see him struggle like that and at the same time, it’s a happy feeling to see him smile because he did do it!

My sweet Jacob. How I wish you did not have to be like this and that you could live being a typical kid. That is not to be. You have a special purpose. This is who you are. This is who God made you to be and it is a gift. I got to share you with others today and they could see just how special you are! I am so Blessed and honored to be your Mother. You are one amazing child and I love you so much!

It seems as though the weaning process from his seizure med is a success. We are not completely off his afternoon dose as we are only half way there but so far so good. On the other hand, his behaviors seemed to have increased. Their could be a correlation between the two. We are seeing his behavior specialist tomorrow so we will see what the plan ends up being. We may have to increase one or both of his behavior meds. We also recently saw a pediatric psychologist. We were referred by his Neuro but also had been recommended by his behavior specialist some time ago. Problem is that insurance does not cover this. We are returning to that office his week for some testing. I have a “book” of questions I have been trying to answer so far to turn in to them. Our hope is that we will be able to determine where he is at across the board. We want to know how to treat him in certain circumstances. For instance, if he is acting up a certain way, do we treat him at a 4 year old? Does he know more than we think (which I hope) or is he further behind than we think.  We are hoping this will help us take better care of him and make sure he is getting all the assistance he needs. We will not get results from the testing until later in September.

We will be heading to Jacob’s open house at school this week. We have not met his teacher yet and I look forward to doing so! Still waiting to hear from the bus on the times for pick up and drop off. Yikes! I am not ready!

I have a folder and a wall of “work” and some art that I can look back and see how much he changed over the year. Although he still can’t identify all the letters of the alphabet, he did learn how to write some other letters. Writing his name improved but toward the end of the year, his processing got mixed up and now often gets it wrong. His ability to color improved a great deal as well. They worked hard on getting him to be able to work for longer periods of time and completing more of the pictures. His teacher said that “writing” was his favorite thing to do. I am so thankful that he actually made friends this year and became more social than he was before.

We pray he will have a good summer. Never know what the heat will do to him since it takes such a toll on his body. We are going to attend the Batten Disease conference in Chicago at the end of July. Other than that, most of our summer will be home. This will be his first summer with our CLS worker so we can adjust the times and go out and do some day activities!

Thank you for all your prayers and support in helping us with awareness. Thanks to Facebook, so many more are aware of what this disease is. I am connected to nearly 200 Batten parents (including a couple researchers, grandparents and siblings) from several countries and it was great to see so many pass along links, share stories, fundraisers and continue to support each other. Can’t imagine going through this without them. God is good!

If you are just finding out about this disease or want to know more about it, please watch this powerful video.

http://www.youtube.com/watch?v=DQChRSCWtYA

What can you do? Help us make others aware of this disease and the need for funding to find a cure. It helps even if you get others to pray for these families as we all know the power of prayer. Please pass on one or both of these websites www.jacobsprayer.org or www.bdsra.org

Together we can make a difference in the lives of these children!

Thank you!

I can’t even begin to tell you how I am feeling. Constantly trying to fight back tears and trying to stay busy so I don’t think about it all the time. I am feeling so dizzy and in a fog and I know it is from stress and worry. I am upset that Mayo said his mitochondria were normal. Then again, trying to give them the benefit of the doubt and wonder if two different tests were performed although the grids are the same. Does one have better equipment to view? Mayo stopping at finding the fingerprints and just stopping assuming the mitochondria were normal? I don’t know what happened. I am in utter shock that the very disease I felt so strongly about him having is now surfacing and a high probability that he has both Batten and Mitochondrial Disease. I am not jumping in to accept a Mito diagnosis along with Batten just yet as I want his case to be reviewed by Mito Dr.’s. Thankfully I have resources that I have access to that give me the names and locations of the top Mito Dr.’s in the country (none in MI).  

Of course we do not have to do any more testing. We don’t have anyone telling us he does not have Batten. Only countless ones saying he does. This biopsy would give us a clearer picture on what we are dealing with. Jacob is such a willing child to go through all of this. He enjoys the attention he gets. I even videoed his excitement once when I told him he was going to the Dr.! If it were traumatic on him, the answer would be no. If there is a chance that any of this could lead to a way to help him or other children, then we have to try! I don’t want regrets for not trying.

Now it gets frustrating as we are working on getting his Neuro on board with us. He keeps claiming he will do anything we want/need but when we ask, he is less than willing. We sent him the report from the pathologist with the new findings and are waiting to hear back from him. He may be intelligent but bedside manner and patient/family care are not his priority. If it were his child, he would stop at nothing to try and help them. So, here we are, not willing to stop fighting!

Please keep us in your prayers. Not sure how long this testing process is going to take but it won’t be overnight as so many are involved. God is with us and He will see us through all of this. I just need reminders of that now and then. Especially in moments where I just feel so helpless. We are so very thankful that Jacob is not following the “rules” and doing better than expected.  We had his retina specialist appointment last week and no changes were noted in 6 months!

Last week we also celebrated 7 years of Jacob being forever ours! Although he has been in our family since he was 2 days old, we returned to Ft. Lauderdale to finalize his adoption. He was just shy of 6 mos. old! We sat in the judge’s chamber and experienced one of the greatest moments with Jacob! The only drawback was the judge was an Ohio State fan (GO BLUE!)! We celebrated that day in Orlando with our friends. This year, Sophia helped make a cake complete with star sprinkles and we sang “happy special day” to Jacob. He was thrilled to blow out the candles!  He loves any chance to celebrate and blow out candles! Every day, we are thankful to his Birthparents for giving us the most precious gift. Some days we are reminded even more just how great that sacrifice was. Jacob, you are such an amazing child!