Aug 5, 2004…Max had an appointment with the Developmental Specialist yesterday. He evaluated Max for almost two hours on his fine and gross motor skills. Max is estimated to be at an 8-9 month level in gross skill and 4-6 month level on fine motor skills. What does this mean? GROSS MOTOR SKILLS: Max can get up on his knees and hands. He can get up on his feet and hands. He is not yet crawling but can rock forward to back. Max is sitting better each day. He can stabilize himself side to side while sitting but still has trouble when leaning back. Max can stand and hang onto an object (i.e. ottoman or table) but must have help returning back to the sitting position. FINE MOTOR SKILLS: Max is not picking up objects with his hands correctly. He tends to grasp at an object and is uncoordinated. Max does not understand that an object still exists if it disappears under a blanket. Max is not babbling or responding to commands (i.e. if you point to an object or if you say “no” or “bye-bye”). Max is responsive but not engaging. He will not come to me if I reach out my arms but smiles when he sees me. I think you get the point! Can you believe that so much can be evaluated…every little thing! It’s enough to drive you crazy. In a nutshell…Max is fine. He continues to prosper more and more everyday. This is one of God’s children. I have quit worrying.
Mom and Barry came for a visit this past weekend. I think Max remembered his grandma. It was a nice visit. I’m kinda glad the beach house was being used this weekend. Having them stay at our home gave us the chance to get ALL the attention!
Aug 12, 2004…Max survived his first Hurricane last night! Well, it wasn’t much of a storm, but it sounds good. Tropical Storm Bonnie is about to make landfall just east of us at Panama City. They have closed the base today, so I get to stay home from work. This is the first chance I have had to write a journal in a while. Max has been busy! He now goes to Daycare, Playgroups, Church Nursery, and Physical therapy. We were going to start swim lessons yesterday at the YMCA, but he is still fighting a minor ear infection. He just can’t seem to get over it. All of these activities are really good for Max. We feel like the more we can keep him active, the faster he will catch up. He is a wonderful kid and we feel really blessed that he is part of our family. He has just started to try to imitate us doing “patty-cake” (Grandma Justice says she taught him this!). He hasn’t got the “Roll-em up” part yet, but it is a wonderful sign that he is now being more interactive with us. Yesterday, he almost sat up by himself. He just needs another day or so and he will have it figured out.
This past weekend his Granpa Keltner (Christy’s Dad) and Nana (Christy’s step-mom, Jackie) came to visit. They brought enough toys, furniture, and clothes to keep him busy until he is five! He really took to Nana. She gets up early, so by the time we woke up she would already have him up and dressed. It was a nice weekend with them.
Christy is taking Max to Dallas next week to visit her Brother (Uncle Trey), her grandfather (Ja-Ja), my parents (Granddaddy and Nanny), and my brother and his wife (Uncle Derek and Aunt Jenny). Yes, each grandparent gets to have a different name for Max to use! It is still amazing to us that this little kid who lived in the middle of nowhere in Russia in the worst poverty and had no one to take care of him now has this amazing extended family to always take care of him! It feels so natural him being a part of our family. We forget that he was adopted. We have only been home from Russia for 43 days, but that seems like another lifetime ago…
Aug 19, 2004... Max and Christy are in Dallas now. I have been working so much, it is probably a good time for them to be gone. I really miss them being here. Max has added so much joy to our life. It is odd coming home to an empty house. I am just happy that Max gets a chance to meet my parents and Christy's Grandfather. Christy says the plane ride was uneventful. She had an empty seat next to her, so Max got to sit in his car seat. He slept most of the way. I guess a 2 hour flight is nothing compared to our 24 hour journey back from Russia! I can't wait for them to get back home... Today is Christy's Birthday... HAPPY BIRTHDAY SWEETHEART!
August 30, 2004…What a great time Max and I had in Dallas! I was able to schedule our plane travel so that Max would be napping (he slept on the plane both rides)! Mom greeted us at the airport and we dropped in at CAAP (now Leading Edge) to see Grandpa Barry. Mom had everything we needed…her house looks like a well-stocked daycare. She even bought us a Jumperoo (for those without kids: Jumperoo means freedom). Uncle Trey came over for dinner, he’s the only one that can get mom to cook a homemade meal…mom cooked 4 nights! Max and I had one day of rest and off to Oklahoma City we went to visit JaJa. Max really enjoyed JaJa’s house. He had a calm sense about him…he slept well, ate well and did not mind all the changes in his schedule. I think that Granny was with us. She would have really loved to play with Max. JaJa and I celebrated our birthdays together and Byron surprised me with a birthday cake…delivered from Florida (well, through the internet). We only stayed one night in OKC and then we drove back to Dallas so Max could meet Byron’s parents. Callie came over earlier in the week and spent a couple of hours with him. Max and I drove out to Plano and met Granddaddy Byron, Uncle Derek, Aunt Jenny, and cousins Raven & Ian. We had a great visit and Max enjoyed all the attention. What a great week…it was one of those weeks that feels like a lifetime ago and went by super fast! Byron is planning on going out of town for several weeks…I am hoping to make a trip back to Dallas during this time…maybe I can slow the trip down a bit.
Since we have been home. Max is suffering from infections in both ears. He is on an antibiotic that is causing diarrhea (fun, fun) and you can tell that he does not feel well. We are waiting on an appointment with an ENT specialist. Our pediatrician has warned us that tubes in the ears are probably in our future. On a positive note: Max’s eye exam came back normal (just a precautionary exam due to his premature birth). One more box checked.
Sep 7, 2004... Well, we missed another Hurricane! This past weekend was Labor Day. Christy, Max, and I went to the beach house in San Destin to relax. We spent the weekend just playing with Max, shopping at the outlet mall, and taking Max to the beach. He seemed to enjoy the beach. As always, he gets very quiet and looks serious when he sees new things, but after a couple of days he started to get used to the sand and water and seemed to like being outside. Hurricane Frances came through, so we packed up early and came home on Sunday. As it turned out, Ft. Walton didn't even get any rain. Of course, Hurricane Ivan is now on its way (Ivan is a good Russian name!), so we will have to watch it closely. Max continues to grow and improve everyday. His latest skill is pulling up on everything. He can now stand up in his crib on his own or pull up on the coffee table. The problem is that he gets up and doesn't know how to get down! Today, Christy and Max are headed to an Ear, Nose, and Throat specialist for a checkup. He is still fighting ear infections. We are planning his baptism for Sep 26th, so we hope to have some family in town to share that with us.
Sep 11,2004... As I type this journal entry, Hurricane Ivan is planning a visit! If a category 4 hurricane hits us directly...we lose our roof. If a category 5 hurricane hits us...we lose everything but the foundation. Needless to say, we will be on our way to Jackson, MS to visit Grandpa Keltner (we should be leaving Monday).
Max had his doctor appointment with the ENT and he needs tubes in both ears. We will try and schedule it as soon this storm passes.
Max got his first tooth on Thursday. It is on the bottom front. Now when he chews on our finger it is really going to hurt. He has been really great these last few weeks. He is so much more active now that he can crawl and pull up on things. His personality is really coming out. We count our blessings everyday!
Sep 25, 2004... It has been a long 2 weeks. We left on Monday, Sep 13th to evacuate from Hurricane IVAN. We left at 7 pm, so that Max would sleep in the car. We went to Jackson, MS to stay with Christy's dad. The ride was uneventful (Bella, Daisy, and Max all slept in the back seat, I think they have all bonded now.) The Hurricane finally hit early Thursday morning. It was very frustrating not knowing how bad things were down here. There was a lot of news coverage before the storm, but as soon as it passed, the national media was on to another story. We couldn't find out any information about which roads were open, was their electricity, did our house make it? The best way to get information was to call people. We had several friends who "rode out" the storm, so we got most of our news from them. Of course they didn't have power either, so they knew even less than we did. Eventually, we found out that our house was ok. Also, the beach house in Destin was fine too. We just didn't have any power. Finally, Sunday I decided to drive back by myself to check on things. When I got to the beach house, power just came on! I checked everything and then went to the Ft. Walton house and checked it. We lost a couple of trees in the backyard and had some damage to the fence and gutters, but overall we did real well. I decided to drive back to Jackson and pick up Christy. Her dad brought her two hours towards me, so I wouldn't have to drive so far. Anyway, it was a very long day and we finally got back to Destin around midnight. We had to take a lot of back roads due to the Hurricane damage on I-10. The Ft Walton house finally got power back on Tuesday. We have spent the week just trying to cleanup the yard and get life back to normal. Max has been great through all of this, but I think he is glad to be back in his bed. We had to postpone his baptism due to the Hurricane, so we will reschedule it soon. We also have to schedule his surgery for tubes in his ears. All of the hospital's schedules have been messed up due to IVAN. Anyway, we are just happy that no one got hurt and that we have all come through this ok...
Oct 9, 2004... I am in Albuquerque, NM for work. I left last weekend and will be here for about 3 weeks. So, Christy is getting lots of one-on-one Max time! It is hard taking care of him by yourself, you just never get any down time. I guess we are very fortunate though. There are a lot of people we know in the military who have been deployed for a year and longer. I can't imagine having to leave Max for that long. I feel like these 3 weeks away from him I am missing so much. Christy sent me some new pictures yesterday and I loaded them on the web. Max is getting so big. He is already starting to wear 12-18 month clothes. Christy said he was having another ear flare up this week. I guess he is running a little fever. We are still having problems getting him scheduled, the insurance companies and doctors are just a pain! Anyway, everyone is doing great. We have rescheduled his baptism for the first weekend in Nov. My mom is coming and Christy's parents are coming, so it should be a very sweet time. Hopefully no more Hurricanes will get in the way...
Oct 11, 2004… I can’t do this alone. I can’t imagine all those single parents in the world raising their children. All the husbands that are deployed for months and years at a time…how do these women do it? I am so thankful for Byron and all the help he gives me around the house. He is such an active Dad. What a truly wonderful man I married!
Byron has been out of town for one week and I am already falling apart. Maybe it would not be so bad if Max were not suffering from ear infections, fevers and now a viral (viral means no Mother Morning Out for the week!) skin rash that took 6 hours in the ER to diagnose. It feels like I have not slept in days. Max has been waking up in the middle of the night screaming. I know that it’s because he does not feel well…unfortunately, Max only knows that it hurts. Daisy our Beagle is also feeling the strain. I have awoken to a kennel full of dog crap two mornings in a row. GOOD MORNING! At this point, our cat Bella is lying low. I think she realizes that the camel’s back could be breaking soon.
Well, we are off to the pediatrician tomorrow. We will be demanding that something be done immediately about his ears and I will be begging for a Xanax prescription. Please say a prayer for all single parents…raising a child is the hardest job in the world.Oct 13, 2004…We’ve been having communication problems with our physical therapist. Several weeks ago, Paige, our P.T., commented to me during one of Max’s therapy sessions that she was concerned with his progress. She commented that Max is stiff in his legs and that this was abnormal. I asked her to define abnormal. Paige then said that this “stiffness” could have been caused from brain damage. Well, Paige said several other things but I stopped listening at brain damage. My initial reaction was devastation. I felt like someone let the air out of my sail. I did the only levelheaded, professional thing I knew…I began to cry. This made Paige start back peddling. She told me that maybe her word selection was not right. She apologized. I left therapy in a daze. All I could think about was Max. This child has been through so much, why this?
Well, two weeks have passed and Max is suffering from his ear infections. I went to his pediatrician yesterday to get him some relief. Max’s pediatrician, Dr. Berke, informed me that his P.T. called about a month ago. He stated that she was concerned with his development and wanted him to order a MRI. Dr. Berke said that Paige suspected Cerebral Palsy. Again, devastation sets in. BUT this time instead of crying, I made a stupid joke about Max playing SEC football. Stupid me.
Max is 10 months and 15 days old today. Max is crawling, pulling up on objects, cruising from one surface to another and taking steps when you hold his fingers. He has only been in the states since July 1st!! When we first returned home (3 months and 15 days ago), Max could not sit up and had a hard time holding even his head up. To me this is progress.
The camel’s back has broken. I am sick of people telling me what is wrong with my child. I am sick of everyone comparing him to “well baby” developmental charts. I am sick of doctors talking behind my back. I want justification for what they are saying.
I called Max’s teacher, Amy. Amy is with the state of Florida’s early intervention/1st steps/Horizon’s program. Every state has this service, free of charge. A friend of mine who gave birth to premature twins told me to call and get Max involved in this service. I was reluctant at first, but it is one of his best therapies. Amy is also an adoptive parent of a boy from Russia. She is therapy for me also. Amy is an advocate by nature…an educator and someone passionate about International Adoption. She recommended that I call a meeting with Max’s P.T., O.T., Byron, myself, and Amy. We all need to be on the same page. Amy is also concerned that Max’s therapist are not taking into consideration his developmental age in regards to his prematurity and the fact that he was in an orphanage for the first 6 months of his life. She thinks Max is progressing great and does not agree with assessments being made by his P.T.
I called my cousin Melinda, who is the mother of a 5 year old with Cerebral Palsy. First, she warned me to listen to the P.T. Paige is trying to express something that she sees in Max. Either right or wrong. . .she has noticed something and I need to listen. It’s better for Paige to be wrong than for us not to listen and Max not get the help he needs. Second, the only person who can make a diagnosis of Cerebral Palsy is a Developmental Specialist or a Neurologist. Thirdly, Cerebral Palsy is a generic term that describes a wide range of conditions from not being able to hold your head up to wear patterns on your shoes being different.
So what now: I am more educated today than I was yesterday. I am more in control of my son’s “plan of care” today than I was yesterday. My gut feeling is that Max will be fine. He is one of God’s children and no matter the outcome he will be loved. We have scheduled his meeting to take place next Wednesday the 20th of October. I will keep the journal updated.
Break through moment: I have taught Max to “Gimme 5”. Yesterday I started holding my hand up and he will join me with his in the air to do a “high 5”. It is so cute. I feel like the light bulb is going off. There is actually a little human inside those beautiful blue eyes! Max is starting to connect.Oct 21, 2004…We had our meeting with Max’s PT, OT and Teacher. The meeting went well. Max’s PT apologized for the miscommunication that had taken place over the past couple of weeks. It got way out of hand. Paige, our Physical Therapist, called our Pediatrician only to request more authorizations for our insurance. When the Doctor asked why, she told him that she was concerned with the symmetry in Max’s legs and the weak muscle tone in his upper body. She DID NOT say the words Cerebral Palsy. She DID NOT request an MRI. We think that Max’s pediatrician assumed Cerebral Palsy because of what the Physical Therapist was describing as his symptoms. Paige (PT) believes that his symmetry and weak muscle tone is a product of under developed muscles (due to environmental factors) and not something neurological. This is a BIG relief. Paige is currently “testing” Max at about a 10-month level. She is not taking into consideration his prematurity or orphanage living. Max is where he should be developmentally. Paige just wants to make sure he achieves his milestone with the “right” technique. Each developmental milestone is a building block for the next.
Max’s OT (Occupational Therapist) says that he has accomplished most 8-9 month skill categories. He is even accomplishing some 10-11 month skill categories. Max still has trouble grasping food items and crossing midline, but he can remove rings from his Fisher Price toy (10-11 month old skill). He is also attempting to imitate scribble on paper.
We found another ally in our fight for Max’s care. Max’s teacher, Amy, contacted an International Adoption Clinic at the University of Alabama Birmingham. We did not even know that there was a clinic so close! For anyone reading this journal who needs an International Adoption Clinic located in the Southeast here is their information: adoption@peds.uab.edu or by phone 205-939-6964. Holly Simpson is the program coordinator.
In a nutshell…our “little man” is doing great. We will continue to make sure he receives the best care needed. We will continue to demand that his doctors communicate effectively and substantiate their diagnosis. We will continue to expect the best from Max and we will continue to love him with all our heart.Nov 2, 2004...I can't believe it's been almost 2 weeks since I did a journal entry. Time just seems to fly these days. I feel like I never sit down anymore. Max is still doing wonderful. He is scheduled for his ear surgery next week. We have a Pre-Op appointment on Monday. Hopefully that will go smooth and he will feel better.
We are working with Max on trying to transition to a sippy cup, but he doesn't like it. He knows how to do use it, but he just prefers his bottle. We will just keep working with him. We are also introducing more and more solid foods into his diet. He now eats cheerios like a champ. He still needs some work on his fine motor skills, but he manages to get 1 out of every 5 in his mouth (the rest end up on the floor for Daisy to eat). He is also eating some baby foods with meat in them and he is eating bananas. He doesn't like picking up the banana pieces because the texture is different to him.
This past weekend was Halloween, so we did what any good parent would do...Dress up your baby and go trick-or-treating so you can get some free candy! We just drove him around to a few friends houses and then we went to the church for dinner. Max wasn't scared with all the kids being dressed up, he really didn't pay them much attention. He just wanted to get on the floor and play with all the big kids.
On Thursday, Byron's Mom and Christy's parents are coming in to town for the weekend. We are finally getting his baptism done (it was postponed due to the Hurricane). We are going to have a few close friends over Saturday Night as a little celebration for Max.
Next week we also have a meeting with our agency Social Worker to complete his first "post-placement" report for Russia. Nov 8, 2004...Wow, what a weekend...I think I need a vacation! This was Max's Baptism weekend, so we had a lot going on. My mom flew into town on Thursday to be here. She hasn't got to be around Max too much, so we were all very happy she could be here. Friday, Christy's parents flew in and my sister and her kids drove down from Georgia. With all the company in town, Max had plenty of people to keep him busy. Saturday I took Max to the beach with my niece and nephew. He hasn't been there since he started crawling. He LOVED it. I would put him on the sand and he would head straight for water. He looked like a little bulldozer plowing around on the sand. I can't wait till his ears are better and I can let him get in the water. We had a small get together at our House on Saturday night to celebrate Max's Baptism. Debbie Miller insisted on taking care of everything for us. She brought all the snacks and the cake. Thanks Debbie!!! We had about 15 adults and 4 kids at the house. It was a great time together. Everyone that came over is like Max's extended family. They have all been there to support us and Max is so blessed to have such a great community of friends. We wanted all of our close friends to sit with us at church for the Baptism. It was important to us that they share in this great moment. Max truly has a large family now! The baptism ceremony was very nice. Max was a little angel. He didn't cry and the water didn't bother him at all. He is such a wonderful baby. Well, everyone has just about headed home, so Christy and I can get back to our normal routine (What's normal anymore?). We had Max's pre-op appointment today for his ear surgery. We are also going to have him circumcised during the surgery. We figured it was better to get it all done at one time. The surgery is on Thursday, so say a little prayer... Nov 12, 2004…We have made it through Max’s ear tubes, hearing test and circumcision. It was a rough day yesterday. We had to be at the hospital by 6am, which meant that we had to leave our house by 5am, so we were up at 4am. His surgery only lasted about 1.5 hours and he did very well. His hearing test came back normal and the tubes in his ears offered instant relief. Now, his circumcision was another story...he was in pain. His first diaper change at home was traumatic. He literally shuttered with pain. I thought that I was going to pass out. The discharge instruction said that I needed to clean the area 3-4 times a day and apply ointment. There was NO way I was going to touch him! I called the doctor and the nurse told me not to touch his penis until the next day. She promised that he would be a different child after 24 hours. Well, she was right. This morning he was back to acting like his old self (jumping in his bed, eating Cheerios and even the Jumperoo). I gave him a bath this morning and completed all my “procedures” on his penis. He was a trooper with no tears. In the beginning we were torn about having Max circumcised. There is not conclusive medical evidence that supports circumcision, if we where not already having tubes put in his ears, it would have been a much harder decision. The Urologist did find a pocket of puss (about 1cc) under his foreskin. The doctor said that he had never seen anything like this before and that it was probably a good idea that we had him circumcised. So, I guess you never know….
We are now in full throttle sign language mode. Max is starting to show some signs of frustration when trying to communicate. He understands commands and what he wants but can’t get the words out. Max is still not forming consonant sounds. He is making new sounds everyday and babbles constantly…but he has not put it all together yet. I know that every mother thinks that their child is the most beautiful of all children…but have you seen the latest pictures of Max? He is beautiful!!! We are so proud of the progress that he continues to make!
P.S. Cheerios has put out a tear jerker commercial with the theme of a Russian Adoption... WE LOVE CHEERIOS! Check it out... Nov 16, 2004…The Concept of the Word “No”. We have been trying to teach Max the meaning of “no”. Max has developed the habit of back arching and screaming ever time we need to change his diaper, change his clothes or give him medicine. Even his Mother-Morning-Out teachers have commented to me how hard Max is to change. Tonight we decided that every time he expressed these behaviors we would say the word no and squeeze his hand. If this did not stop the negative behavior we would then promptly place him in his crib until he quit crying and start the process again. Of course, we decided to start this lesson after his bath. As predicted he arched his back and screamed when we needed to put on a diaper and dress him for bed. First, we told Max, “No”! Secondly, we squeezed his hand and repeated the word “No”. Finally, we placed Max in his crib and waited outside his bedroom door until he quit screaming. Before you call child protective services, let me explain…we DO NOT squeeze Max’s hand hard and we do not yell. Max, most of the time is not even crying but yelling. Max has yet to last in his crib for more than a couple of minutes (it feels like an eternity). After about 3 times of placing him in his crib, he sat through an entire diaper and pajama dressing without acting like a wild banshee. Hopefully, consistency will be the key. In fact, we even placed him in his crib without a diaper (he was screaming so hard that I could not wait to get a diaper on him…and we decided that you have to strike while the irons are hot). Luckily, Max did not go to the bathroom! We hope that he will learn that cooperation during a diaper/clothing change is non-negotiable. We are just trying to raise a respectable, caring child. Lord, help us…. Nov 28, 2004... HAPPY BIRTHDAY MAX!!! Today our little man turns 1. I can't believe it. He is doing so good. We have had a busy week. Grandma and Grandpa Justice came in to town for Thanksgiving. We spent the weekend at the beach house in Sandestin. Grandma cooked Max a pot roast on Wednesday night and an old-fashioned Thanksgiving feast on Thursday (complete with Turkey, dressing, and pecan pie!). Max is moving to almost all solid "table" foods now. He is getting to where he doesn't like jar food. Thursday out of the clear blue he started talking!!! Well, he isn't really talking, but he is babbling consonants now. He just started saying "na-na-na-na" and "da-da-da-da" all on his own. When he talks he has the sweetest singing voice. It is very different from his "aaaaa" voice that he has been grunting for the past few months. We had a Birthday Party for him on Saturday. Christy made cupcakes. He didn't know what to do with the candle, but he figured out how to eat the cake. Our friends Scotta and Trey and their two girls stopped by, so it made it a nice party for him. He had plenty of presents mailed in from all of his family. Max has more toys than he knows what to do with. He is growing up so fast. Christy and I have a new bet about when he is going to walk. I say before Christmas and she says the end of January. We'll just have to wait and see. Dec 9, 2004... We took Max to a Christmas parade last Saturday. He didn't really care about the parade (In Florida, we have a "lighted boat" parade), but he loved crawling in the grass with all the big kids. We went out to dinner afterwards for crab legs and we had to walk out of our first restaurant with him! He is usually very good at restaurants, but it was just too late after the parade and he was worn out. Plus he has been fighting a little cold, so I think we just stayed out past his bedtime.
Other than that, he is doing fine. He is starting to balance himself while standing for a few seconds, I know just any day he will take his first steps. He better hurry up, so I can win the bet with Christy! We have taken Max off of his formula now, so he is just drinking whole milk. There haven't been any problems with the transition. Our little man is growing up fast... Dec 27, 2004... We had a wonderful Christmas with Max. He got way more presents than he needed. We spent the Christmas weekend at the beach house in Destin with Christy's Mom, StepDad, and Brother. Max opened a few presents, but he still doesn't have it all figured out. I think he was just happy to play with the Boxes! It was cold here in Florida, so we mostly just stayed indoors. Max is fighting another cold/respiratory infection. We took him to the doctor today and they gave him a nebulizer breathing treatment. Trust me that was an experience. Max doesn't like to be confined and we had to hold him tightly for 15 minutes while he breathed through the mask. They sent us home with a machine and we are supposed to do it every 2 to 4 hours as needed. We aren't sure if it is just a bad cold or pneumonia or RSV or asthma. They are running a couple of tests, but it is probably just another cold. We have to be careful because of his background. He was premature and has had bronchitis and pneumonia several times this past year. We will just keep watching him closely. Even with a bad cold, Max is still wonderful. He is always in a great mood and smiling and laughing. He has so much energy, and is just the most pleasant kid I have ever seen (I'm sure all parents say that). Christy does a great job with Max and they have a very special bond now. He is finally starting to say "Dada" and "Mama" on a more consistent basis. I will put some pictures up on the web next week, we are still in Destin and I won't be back to Ft Walton until late this week . By the way, I lost the bet, Max didn't walk before Christmas! But he is close... |
