Lots of questions

Thursday August 30, 2012

Today my sweet little Taevon came home with his pants soaking wet and with his clothes all twisted around. It broke my heart. It seemed as if he was just dropped into his wheelchair at the last minute and put on the bus. His harness was over his arm instead of his shoulder and he was so crabby. I am just mad. He can't tell me what happened. He cant tell me why he is upset. He was also very hungry when he came home which makes me wonder if he was fed at the right time or even at all. He is supposedto be fed at 9:30 am so he shouldnt have been hungry at 11:20am. The nurse is wanting me to change his feeding schedule so she doesnt have to feed him at school. He eats every 3 hours and she is wanting him to go 5 hours between feeds. She told me he is only in school for 3 hours so he should be able to eat before and after school. Yes, he is only in school for 3 hours, but the bus picks him up at 7:15am and doesnt bring him home until 11:20am and that is four hours already. He gets up at 6:30 am and that is when he wants to eat so that is almost 5 hours. I am not changing his feeding schedule. They talk about how they are equipped to deal with all sorts of special needs and I was assured by the director of Special Education that his Gtube would not be a problem. My questions went unanswered today but I will be calling again in the morning until they are answered. It isn't right that people think children with special needs arent as important as those who don't. All of my children are important and deserve to be treated the same by others. They all mean the world to me and those who do not treat them all the same will be the ones that are losing out. These are amazing little boys and will change your life for the better if you let them.

Keagan's orientation

Monday august 27, 2012

Tonight was Keagan's preschool orientation. He can't wait to go to school. He was so good and loved going with his teacher to his classroom. He will be going Monday through Thursday in the mornings. I am so excited to see him make new friends and learn new things. I am also sad because my boys are growing up so fast. I miss having them all home during the day.

                                                        such a sweet little boy

G grandmas and G papas

Sunday August 26, 2012

Today was our first family outing since Taevon's arrival. We took the boys up to Avilla to see G grandma and G papa. The boys had a great time. Aaron loves G papa. He spent the entire time sitting by him. It was so cute. He smiled and laughed and loved to have G papa scratch his back. Taevon looked around and just took it all in. Keagan and Nicholas played with the toys and enjoyed looking at the sea shells. They can't wait to go back again.

Taevon's first day of kindergarten

Thursday august 23, 2012

Taevn started kindergarten today!! I missed him this morning. He was very excited to see me after school and was bouncing around and smiling. He is so cute. His teacher said he had a good first day. I can't believe that all of my boys are in school. At least I always have at least one home since they go to school at different times, so that makes me happy. Soon they will all be in school all day.

                                           getting sleepy after a long day!!

Back to school night

Tuesday August 21, 2012

Tonight was Nicholas' back to school night. He loves school and he adores his teacher. He was so cute showing us around his school. He kept telling us we were on a tour and we needed to listen to all of the information. We saw the librarian (who loves Nick) and she told us that everyone in the school loves Nck. That was so nice to hear because he is such a sweet little boy. We signed up for his conference, to chaperone a field trip and I signed up to be the room mom again. I love working in his class and seeing him interact with all of his friends. I can't wait to see what he is going to learn this year. He is growing up so fast, but I am proud of the person he is becoming!!

Taevon's Neuro appointment

Taevon had his first neuro appointment today. I am so glad that they were able to get him in today. Dr O. talked about his Baclofen pump. I think for right now we will just stay on the liquid meds. I don't want him to have another surgery and Dr O said that is something we can talk about later. He did mention that he is on a very low dose of Keppra and to look for any signs of seizure activity. He said he didnt want to increase it if this low dose was effective so he is going ot recheck him in November. We are so lucky to have such great drs here. I love all of our drs and they have been so good with the boys. I love these little angels and want the best care for each of them. they are my whole world!!

Taevons IEP

Tuesday August 21, 2012
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I had Taevon's IEP today. He is such a sweet boy and I am anxious to get him into therapy. We talked about where he was at and made his goals. He has a lot of hard work ahead of him, but he is a fighter! The nurse wnated me to change his feeding schedule so she did not have to do it, but he needs to keep his schedule. He has been through so many changes and he has been eating every 3 hours for 5 years and it is what he is used too. He starts this Thursday!!

Science Central

Nicholas and Keagan went to Science Central to see the 3D Mars display. They had so much fun. They played and enjoyed all of the different activities.

Nicholas loves to talk and interviews everyone!! He looked so cute sitting at the desk!!

Kegan did the Tornado !! He loved it and wanted to do it again!!

They bought dinosaurs that grow once they are placed in water. They couldn't wait to get them started.

Aaron, Taevon and I enjoyed our afternoon together! They love each other and always want to be in  the same room together! I wish they could be in the same class this year!

Aaron's first day

Monday August 20, 2012

Today was Aaron's first day of school. He looked so cute in his school clothes!

                                                                 Love this little boy!

I missed him today and am so glad he is home. I don't think I will ever get used to having all the boys in school. I am looking forward to their vacations!!

Too long of a bus ride

Aaron starts school Monday. The bus driver was nice enough to come over with her bus yesterday afternoon. She put Aaron on the bus and was so nice. He didn't get upset and wasn't scared. He looked like such a big boy. Then she told me the pick up time. At first I thought either I misunderstood or I had the wrong time for school. A 40 minute bus ride!?! No child should be on the bus for 40 minutes. My oldest child is the first pick up in the mornong and he is only on the bus for 10-15 minutes. Aaron is blind and medically fragile and a 40 minute bus ride is just not going to work for us.

special needs and school

Friday August 17, 2012

Next week is a big week. Taevon and Aaron start school. Taevon will be in Kindergarten and Aaron will be in Preschool.  I am nervous about the care they will receive while in school. I talked with Taevon's teacher and she wanted to know if he was coming to school with a nurse. Aaron's school nurse has yet to get in contact with me about Aaron's needs. I have Teavon's IEP next Tuesday so he will start school after we get his health plan written. I am still waiting for Aaron's school to update his health care plan.  Getting ready for the kids to go back to school is a lot of work. Nicholas just needs his Epi pen and he is all ready, but for the others there is a lot more needed. There are forms for the drs to fill out, extra meds for the schools, IEP meetings, care plans to be made/altered and nurses and teachers to meet with. My anxiety is high in anticipation of sending Taevon, Aaron and Keagan to school.

Taevon's special needs: Shaken baby syndrome, spastic quadriplegic cerebral palsy, scoliosis, epilepsy, G-tube, visually impaired, developmentally delayed, and nonverbal. He is unable to walk or crawl and has a wheelchair. He is fed every 3 hours and has numerous meds. We met this amazing little boy a few weeks after his 4th birthday and were finally able to bring him home 3 weeks ago (a few weeks after his 5th birthday) He has brought us so much joy! I can't wait to see what God has planned for this amazing little boy. We are patiently waiting to finalize his adoption.

He will receive PT, OT and speech from the school. Through Turnstone he will also receive PT, OT, Speech, and Water Therapy. He is going to start therapeutic horseback riding lessons and hopefully vision therapy.

Aaron's special needs: septo optic dysplasia (blind) diabetes insipidus (has to do with his sodium level), hypothyroidism, epilepsy, panhypopituitarism, congential adrenal insufficiency (cortisol insuffiency), trouble controlling his body temperature, hypoglycemia, missing the corpus pellucidum and has a very thin corpus callosum, developmentally delayed, sensory issues, and nonverbal. He is unable to walk and has a wheelchair. Besides needing to closely monitor his liquid intake to keep is maintain his sodium level we also need to keep an eye on any signs of an adrenal crisis. He also does not chew so he only eats soft foods and drinks pediasure to get enough calories. He has numerous meds and ER meds for an adrenal crisis. Aaron is such a special little boy. God has work3ed wonders in his short life. We met this little angel when he was 18 months old and were able to bring him home 2 weeks after his 2nd birthday. He has taught me so much and has come so far since he came home. We finalized his adoption almost 2 years ago.

Aaron receives PT, OT, Speech and Vision Therapy at school. He also receives PT, OT and Speech through Turnstone. He is also getting ready to start Therapeutic Horseback riding lessons.

Nicholas started school (first grade) this past Wednesday and we love his school nurse. He has a peanut/tree nut allergy and has a Epi pen. He did great last year in Kindergarten and we never had a problem. The nurse is very detailed and a note came home with his class about his allergy. We were lucky enough to bring this cutie home from the hospital and we finalized his adoption when he was 9 months old. God has amazing plans for Nicholas. He has such a strong faith and loves to pray out loud in Sunday School.

Keagan starts school (preschool) September 10. He is so excited. I am hoping he does well.

Keagan's special needs: has Fetal Alcohol Syndrome, Sensory Processing Disorder, and he suffered a stroke that caused a lot of frontal lobe damage. He is doing well with his speech but still struggles in a lot of different areas. We are trying a regular preschool to see if he is able to maintain, if not he will be enrolled in our areas special needs preschool. I think this is where he needs to be but the school system wants to try a regualr classroom setting first. We were told about this sweet little boy and we went to meet with his social workers, along with many other families. We were called the next day and told we were chosen as his forever family. We went and picked him up the very next day! We finalized his adoption a year and half ago. He is a ball of energy and has the cutest dimples. I feel so blessed to have this special little boy call me mommy.

Keagan received Speech and OT but met his goals early last year.

I am sad that the summer is over. I love spending time with all of my boys at home, but am excited to see what they will learn this year. I am looking forward to next summer. I know this year will go fast and I will be busy with the boys schools, therapy and dr appointtments (average 3-4 a week) and sports. It is crazy but I love it! I feel so lucky that God chose me as these amazing little boy's mommy!

GI appointment

Wednesday August 15, 2012

Taevon had his appointment with the GI Dr. He was great. He explained everything and was very detailed. He goes back October 16th so I can learn to change his Gtube myself. It will need to be changed every 3 months. He thought everything looked great and kept all of his meds and feeds the same. Taevon did fine. He is such a sweet and happy boy. He smiled and was in a great mood.

After school

Wednesday August 15, 2012

Nicholas had a great day today! He was the first one to get off the bus this afternoon! And he still gives hugs. He loves his teacher and has made lots of new friends. He was so excited that he got to sit in his same seat on the bus with his 2 friends. He can't wait to go back tomorrow!

Ist Grade

Wednesday August 15, 2012

Today was Nicholas' first day of school. I can't believe he is in the First Grade. Time has gone so fast, way too fast for me. He was so excited he jumped up this morning and was ready within minutes. He talked nonstop about riding the bus and seeing all of his friends. I can't wait to hear about his day this afternoon! I look forward to the bus coming and seeing his smiling face. Last year he would run off the bus and give me a hug. I wonder if he will still do that or if he is "too big". I can't wait to see what he will learn this year. He LOVES school!

                                  he had to check his dinosaurs before he left this morning!

I am going to miss my sweet little boy today. I can't wait for 2:45pm!!!  I will be busy having fun with my other little angels today. Taevon also has a drs appointment with the GI today. Can't wait to get some more supplies for his Gtube!

My anxiety

Sunday August 12, 2012

School starts Wednesday. The closer it gets the higher my anxiety. Nicholas LOVES school and I do not worry about him as much as the others. He is able to tell me everything that goes on during his day. He was able to tell me in detail about the incident involvong the art sub where the principal had called and told me that he didnt think anything sexual had taken place between Nicholas and the sub but that he had dismissed him from the school. My other boys have can't tell me what goes on.

Keagan is doing great with his speech but he still has trouble explaining himself. He still has problems sequencing events and has yet to grasp time. Everything is "this morning".  Aaron and Taevon are both non verbal.

Aaron has a lot of medical issues. He is blind and different sounds make him cry. He can't tell anyone that he isnt feeling well, that his blood sugar may be low or that his sodium level might be off, or that his body temp is dropping, that his ears or throat hurt. He can't tell me that they gave him the right amount of liquids that he did or didnt drink it all. I am just supposed to trust they will do everything right. The nurse last year dismissed his sleeping in class as a "growth spurt". She didnt feel the need to tell me he had been sleeping until the last day of school. He was sleeping because he was having seizures! The new nurse didnt even speak to Aaron and was not interested in his medical history. To be told by the drs that children like my sweet Aaron often die and that he is at a high risk for sudden death makes me nervous to have others in charge of his care. And when I have people that don't seem to care makes me want to keep him home.

Taevon also can't tell me about his day. I have to rely on the teachers to inform me of what he does during the day. He has only been with us for 2 weeks so I am still learning his sounds and cries. He is visually impaired and is so jumpy and hates to have people behind him. Are they going to make sure that people don't go behind him until he is able to learn to trust them. He gets tired of being in the same position for too long. Are they going to leave him in his wheelchair all day or are they going to make sure he gets moved around.   My mind is going in a million different directions. I really just want to keep my sweet little angels at home. I do therapy and learning time all day long. I work with them all the time. I just want them to be safe and happy.

Happy 5th Birthday Taevon

Saturday August 11, 2012

Happy 5th Birthday Taevon!

We had a Sesame Street party for Taevon today. He was a little overwhelemed with all of the people and the noise. After everyone left he calmed down and was full of smiles.